Prognosis

What it is

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:

• Rapid predictable decline - conditions such as some cancers are often associated with a short period of rapid decline e.g. pancreatic cancer, brain tumours.
• Gradual decline - conditions that present with a long period of slow decline until death include dementia, frailty, and multimorbidity
• Uncertain decline - uncertain illness trajectory with periods of improvement and deterioration. This often includes conditions related to organ failure:

• end-stage renal failure (ESRF)
• chronic obstructive pulmonary disease (COPD)
• heart failure
• progressive and life-limiting neurological conditions such as motor neurone disease (MND), Parkinson’s disease, and dementia.

Why it matters

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:

• discussing preferences for care including preferred place of care or place of death
• setting and achieving important personal goals
• making plans for after the person has died
• saying goodbye.

For clinicians, an awareness and consideration of prognosis can inform decisions surrounding care choices and advance care planning.

In practice

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.'

Difficult conversations

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.

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.

Recognise changes

Nurses can look for indications of change and the rate of change by exploring

• how well or comfortably the person is managing with activities such as bathing, dressing, mobility
• how well the person is communicating verbally
• the person’s energy level and the amount of time they are sleeping
• the person’s appetite
• the person’s mood.

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) (315kb pdf), or SPICT-4ALL (317kb pdf) can help to identify changes in a person’s condition and palliative care needs requiring follow up.

Supporting hope and coping

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.