For the most aggressive brain tumors like glioblastoma (GBM), a stage 4 cancer, life expectancy with treatment averages 12-18 months, though some live longer (even years) while many survive less, with 5-year survival rates around 5-10%. Prognosis varies greatly by age, overall health, tumor type (e.g., Diffuse Midline Glioma is often <1 year), location, and treatment response, so speaking with a doctor for personalized information is crucial.
The average glioblastoma survival time is 12-18 months – only 25% of patients survive more than one year, and only 5% of patients survive more than five years.
As the body shuts down from advanced cancer, early signs often involve profound fatigue, reduced appetite/thirst, increased sleep, and withdrawing from activities, with the body slowing down overall; later, breathing becomes irregular (rattly/gurgling), circulation slows causing cool/blotchy limbs (mottling), urine darkens and lessens, and confusion/unresponsiveness may increase, though hearing often remains.
People may have trouble swallowing food and fluids at the end of life. People with cancer may have trouble swallowing in the last days of life. Both fluids and food may be hard to swallow, causing a loss of appetite, weight loss and muscle wasting, and weakness.
Hospice care is given to people during their last 6 months of life. Palliative care can be given at any time during a serious illness such as cancer. Palliative care can be provided while the person with cancer is receiving treatment to cure or control their cancer.
The end-of-life process varies greatly, lasting from hours to weeks or even months, depending on the individual and illness, with the "active dying" phase often taking days or hours as the body slows down, though some symptoms can appear months earlier in the pre-active stage. It's a gradual, natural winding down, not a fixed timeline, with some experiencing peaceful transitions while others may have periods of restlessness or confusion.
Key signs 2 weeks before death at the end-of-life stages timeline: Extreme fatigue and increased sleep. A marked decrease in appetite and fluid intake. Irregular breathing patterns (Cheyne-Stokes breathing)
Other symptoms that are common for patients experiencing end-stage brain cancer include: Frequent headaches. Agitation and delirium. Agonal breathing (gasping breaths that occur when a person is struggling to breathe)
As people get closer to dying, they may sleep more, become drowsy or be difficult to wake. They may fall asleep while talking. A person may slowly lose consciousness in the days or hours before death.
When death is near: Signs and symptoms
Speak soothing words
Hospice Isn't About Giving Up
It's not a place to speed up the process of dying. A doctor suggesting hospice does not mean they're giving up on providing care and medical treatment. It's end-of-life care, but this doesn't mean giving up hope. It means shifting focus from curative treatments to comfort and support.
In our experience, which is based here on talking with many carers, the person with brain cancer can remain stable for a while but then deterioration happens very quickly, sometimes over a matter of hours. For more information on brain cancer progression, read Part 5 of the End-of-life Care resource, page 45.
Palliative treatment helps to improve quality of life by managing the symptoms when a brain tumour is no longer curable. As well as slowing the spread of cancer, palliative treatment can relieve pain and help with other symptoms. Treatment may include surgery, radiation therapy, chemotherapy or other medicines.
In the hours before death, most people fade as the blood supply to their body declines further. They sleep a lot, their breathing becomes very irregular, and their skin becomes cool to the touch.
What other signs might there be that death is near? One is 'terminal agitation' or restlessness. This often appears as a need to get out of bed, agitated behaviour or commonly plucking of the sheets or 'knitting' of the hands. They might reach out as if towards something or somebody.
Tell Them It's Okay to Let Go
First, assure them that while it's normal to want to hold on at the end of life, it's okay to let go. Don't force things, but do remind your loved one of how much you love them. Let them know you're not angry and don't hold any resentment that they're dying.
Changes in breathing
You may notice a change in your loved one's breathing pattern. It may become slower, less regular and shallower. Or it could become deeper and more rapid. If your loved one is anxious or agitated, or if their tumour is in the brain stem, they may breathe faster and become breathless.
As a brain tumor grows, more serious symptoms can develop:
Stage 4 Brain Cancer Timeline
The timeline for progression and survival rates for stage 4 brain cancer varies based on tumor type, patient age, overall health, and whether treatment is pursued. Median survival for glioblastoma is 12-18 months with standard treatment (surgery, radiation, and chemotherapy).
Needing more sleep
They are likely to spend more time sleeping, and will often be drowsy even when they are awake. They may also drift in and out of consciousness. Some people become completely unconscious for periods of time before they die - this could be for a short period or as long as several days.
Physical signs of dying
They might close their eyes frequently or they might be half-open. Facial muscles may relax and the jaw can drop. Skin can become very pale. Breathing can alternate between loud rasping breaths and quiet breathing.
As organs and bodily functions shut down, minimal amounts of nutrition or hydration/liquids might be needed, if at all. We recommend using the body's gradual decline as an indicator for when to stop giving food and water to hospice patients.