A prognosis is a prediction about the future trajectory of a person’s illness, including information about how the disease will affect their quality of life and when it might end their life. Accurately predicting what will happen is very difficult. It is important that people with advanced illness and their families understand this. A focus on likely disease progression and future needs may be more useful.
Often three trajectory categories are referred to for expected deaths:
Watch Video - Palliative care from diagnosis to death from BMJ
Watch the Video from BMJ
Open discussion about prognosis can facilitate shared decision-making and person-centred care.
It can help the person and their family to prepare for approaching death, for example:
For clinicians, an awareness and consideration of prognosis can inform decisions surrounding care choices and advance care planning.
The initial disclosure of a diagnosis and prognosis is often the role of the person’s doctor or a nurse practitioner. Nurses can assist people with advanced illness and their families to integrate a new diagnosis or prognosis into their day-to-day life. Allied health members of the care team could also be called on to help with this.
You can help by asking if there is anything they want to know or discuss. Some people may want to know details and others not at all. Family members may be keen to understand possible timeframes so that they can arrange to spend time with the person. Knowing where to find trustworthy information can help.
Questions on prognosis can be difficult to answer.
You can say:
'That is a really hard question for me to answer. What I can do is check with the doctor and then discuss this with you.'
Often people with advanced illness are waiting for health professionals to start the conversation. Follow the person’s lead about when and how discussion of their prognosis and wishes takes place. If possible, have these discussions when the person is not acutely ill or distressed. Ask what they understand of what has been said and provide explanation as needed. If wanted, help them to find more information. This can help the person to understand their prognosis and what their future may hold.
You can acknowledge that providing an accurate prognosis is difficult.
Read CareSearch Communication Starters (122kb pdf)
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You can say 'Many people expect doctors and nurses to know what is going to happen but we often need to make educated guesses. Every person is different. I can only tell you what usually happens to most people in your situation.'
CareSearch Communication Starters has a list of questions or phrases you can share with GPs to initiate and continue conversations about palliative care.
Nurses can look for indications of change and the rate of change by exploring
Reflecting on how these were a month ago, a week ago, even yesterday, can suggest a pattern of change. With a focus on quality of life, nurses can explore how the person would like to live in light of this pattern of decline and what supports could be the most suitable.
Predictive tools, such as the Supportive and Palliative Care Indicators Tool (SPICT) (298kb pdf), or SPICT-4ALL (299kb pdf) can help to identify changes in a person’s condition and palliative care needs requiring follow up.
People in your care may look for positive signs and to maintain hope. It can help to ask them to describe what they are hoping for, to talk about quality of life (what does that mean for the person, what are their priorities, what can be planned for), and build trust. Nurses can encourage the person to make short-, medium-, and long-term goals with an understanding that the course of terminal illness is unpredictable.
Understanding the hopes and dreams that have been threatened by this illness, can be the basis of supporting a person's grief.
This information was drawn from the following resources:
Read End-of-Life Essentials' How to discuss prognosis and end-of-life issues (142kb pdf)
Use the VitalTalk tips for Discussing prognosis
Access more Prognosis Resources
Page created 15 August 2022