Why patients and families need to know
For patients and families, having an idea of what is happening with their disease, and what to expect, allows them to make plans and choices.
- The difference between a prognosis of days to weeks, versus a few months, is enormous. It may completely change a person’s priorities – where they want to be and with whom, and how to spend their remaining time.
- Differences in these magnitudes of time can be predicted reasonably for many patients.
- Patients’ attitudes to ongoing treatment and interventions often shift as the prognosis shortens.
Decisions about site of care may also be affected by prognosis:
- Carers are sometimes able to provide intense care for a short burst, as long as they are well informed and supported with adequate services, but they may be unable to sustain the same level of care for long periods.
- Palliative care services cannot provide long-term care for inpatients; families may need to think about residential aged care if the prognosis is months and the need for good physical nursing is the main focus of the person’s care.
How to discuss prognosis
Patients generally will ask for a prognosis, so you need to be prepared to discuss it. If the patient doesn’t ask, but you think they may need to know, it is ok to explore what they actually want to know.
Although prognostication is not a perfect science, we can provide useful guidance.
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TIP - Talk in terms of "days" or "weeks" or "months" - and "a few" or "many". This gives patients a reasonable, useful sense of what they can expect, without creating any false sense of certainty. |
Prognosis in advanced cancer
Cancer has a relatively predictable trajectory in the late stages. In general, onset of constitutional symptoms – cachexia, anorexia, weight loss and fatigue - suggests that disease is progressing.
Palliative chemotherapy may alter disease progression. The benefits and burdens should be assessed relative to the patient’s performance state and wishes.
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TIP - In advanced cancer, the performance state has prognostic significance. The performance state closely reflects the burden of disease. Rate of change is a useful global index of disease activity.
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TIP - An Australian Karnofsky Performance Scale of less than 40 or an ECOG score of greater than 3 correlates to a median survival of around 3 months for patients with advanced cancer.
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Prognosis in non-malignant conditions
Prognostic approaches are available to assess a number of non-malignant conditions, although in general these are not as predictable as cancer in their disease course, because of their potential for unpredictable exacerbations.
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TIP - There is a general disease trajectory for non-malignant conditions – this concept may be helpful in planning care. |
Identifying the terminal phase
Identifying the onset of the terminal phase is important in order to focus on comfort, and minimise burdensome treatment. Common features of the terminal phase are:
- Reduced level of consciousness, or mainly asleep
- Mainly bedbound
- Reduced oral intake and difficulty swallowing.
In patients with severe dementia and similar end-stage chronic conditions affecting the conscious state, it may be quite difficult to identify the onset of the terminal phase.
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This page was created on 26 May 2009 and is due for review in May 2011.