What to expect in the final weeks
Information based carers experiences caring for brain cancer patients
The natural progression of brain cancer is that the patient with brain cancer can remain stable for a while but then deterioration happens very quickly, sometimes over a matter of hours.
The natural progression is that the patient will spend more and more time in bed, will become withdrawn and sleep more, so the patient slips into a coma. Hearing is the last sense to go, so keep talking gently to the patient as much as you can, whilst you hold their hand. In the last stage of disease, brain tumour patients can present severe symptoms due to the growing tumour or to treatment side-effects, which require adequate palliative management and supportive therapy.
Not every brain tumour patient will experience every symptom, nor does the presence of the symptoms mean that the patient is near to death. If you have any concerns discuss them with your clinical nurse specialist first. This person will know your context better than your GP.
The most frequent symptoms observed in the last four weeks of life are:
Drowsiness/increased sleep 85%
Dysphagia (difficulty swallowing) 85%
Agitation and delirium 15%.
Agonal breathing 12% - Agonal breathing is common in the terminal phase of life. This is a pattern of breathing typical of dying patients. Breathing becomes rapid and shallow, then the diaphragm flutters and stops. The patient doesn’t take another breath then they gasp suddenly and breathe very rapidly for a few seconds until their breathing returns to a shallow rapid pace again. It can go on for days.
Other signs that could suggest that the disease is progressing towards include prolonged confusion, visual hallucinations, withdrawal from socialising, loss of appetite, slowing down of bladder function, a cooling of the skin, loss of vision (the patient will turn towards a light source), increased pain and involuntary movements.
What can I do to help?
You do not need to be alone for this phase. Consider having someone there to help you. This person can provide you with comfort, support and make sure you are OK. If you are at home you should ensure that the GP is informed so they can assess whether pain relief is needed.
* Talk calmly and quietly to the patient. Let them know you are there.
* Keep the patient warm with blankets.
* Leave soft lighting on.
* Keep the bed clean. A catheter and management of a catheter will be provided.
* Ice chips are excellent for keeping the mouth moist. Lip balm and swabs are also useful to freshen the mouth.