Sometimes, it helps to look back to understand how we have moved forwards. This blog aims to help us consider how patients process information from an awareness context perspective. To understand awareness context theory, though, we need to go back to the 1960s.
Glaser and Strauss (1965) studied the process of dying in six hospitals in the San Francisco Bay Area of the United States. They became intrigued that people were unaware that they were dying more often than not. In contrast, family members and hospital staff were more likely to be aware of what was happening.
To try and understand what was happening, Glaser and Strauss analysed how ‘structural conditions’ including organisational secrecy, influenced how people interacted with each other. In particular, they focused on the management of and willingness to share information that someone was dying. They observed social interactions between patients, relatives, and healthcare professionals to explore this.
From their findings, Glaser and Strauss identified four main types of awareness contexts; three of which reflected a tacit, unspoken consensus of silence:
Closed Awareness: The dying person is unaware that they are dying. But others including their family and friends and those caring for them are aware, but may not talk about it.
Suspected Awareness: The patient has an idea that all is not well. But no one is telling them. Instead, they look for cues in another’s behaviour to confirm their suspicions.
Mutual Pretense Awareness: Everyone, including the patient knows that they are dying, but no one talks openly with each other about this.
Open Awareness: Everyone, including the patient knows of their impending death, and openly acknowledge this through their interactions and conversations.
Back then, Glaser and Strauss reported that it was not uncommon for people to die without openly knowing or talking about their impending death. Mainly, this was because doctors and nurses frequently controlled how much or what information would be shared with them — a bit like a secret pact.
The reason they did this was that they followed a paternalistic approach. I want to think that this decision was made with good intentions. But is this naïve? Some critics would describe this act as inhumane and deceitful (Seale, 1999). It meant that people couldn’t plan or prepare for their death or say goodbye.
The study came under some criticism by academics. But the study was influential in raising awareness of death and dying and communication. Perceptions to sharing information have changed over the years. A more open awareness context is preferred, whereby we can have open and honest conversations with patients. Consequently, people can make decisions, prepare and plan for their deaths.
But we know that simply focusing on a management of and willingness approach to communication isn’t enough. We also need to consider how emotions and thinking influence how we process information (Timmermans 1994).
For example, can we grasp what we are told and retain that information if we are in an emotional crisis? I wrote a previous blog about being told I was dying in an emergency department. That news was wrong as it happens. But the point I try and make here is that if I had been reasoning at that time, I would have questioned the doctor more. I couldn’t process the information more because I was in an emotional tailspin.
Consequently, Timmermans extended Glaser and Strauss initial theory. He revisited open awareness contexts and made some additions:
Suspended Open Awareness: We receive information. But we disregard it if we feel it is false or overly pessimistic.
Uncertain Open Awareness: We choose to disregard negative information. We hold on to the hope that things will work out better than expected.
Active Open Awareness: We fully accept the implications of the message and act accordingly.
The following quote sums this all up,
Family members and patients are powerful actors in the construction of an awareness context…that information does not necessarily lead to open awareness. The way patients and relatives cope with the terminal information determines the kind of open awareness context. (Timmermans, 1994)
Consequently, academics viewed these changes positively. But Mamo (1999) believed the theory could go one step further.
She suggested that we also need to think about the ’emotional work’ people engage in. This work determines how people react and act upon the information given to sustain their desired awareness context.
To explain, Mamo describes how a patient and family didn’t ignore information about the seriousness of a loved one’s condition. Instead, they chose to wonder if the information was correct. Could things be better than expected? They did this hoping that they could carry on living day to day and not have to worry about the future.
In my PhD, I extended this theory further.
An important finding from my study showed that not only did professionals manage the awareness context, as illustrated by Glaser and Strauss, Timmermans and Mamo, but patients did too.
Through their own volition or the support of their relatives, some patients created a context for themselves, which was purposeful and purposefully managed. This helped to create a ‘space to exist.’ Patients used control as a strategy to protect themselves and those around them.
However, doctors frequently seemed unaware that patients played a part in controlling their awareness. Many doctors did not explore how the patient (and their relatives) felt. Something which is important when conveying significant and life-threatening information.
When asked to describe what they thought the patient’s needs were or how they might have been feeling, doctors were often uncertain. Consequently, doctors frequently misjudged a patient, and opportunities to explore the patient’s perceptions were lost.
Rather than explore how a patient was feeling towards any information given, they focused on their agenda and the medical technical aspects of information exchange.
Although doctors may control the way they convey information and when, patients also control what they do with that information.
As healthcare professionals, we need to be mindful of this and deliver information at the patient’s pace.
We need to remember to explore how patients are feeling and how they perceive the information we give them. Furthermore, remember to revisit previous conversations where possible, and explore how much information a patient can receive at any given time.
