Understanding Physical Changes Near the End of Life

This page is for family members caring for someone with cancer in the last weeks of life. It explains common changes, what they may mean, and when to call for help.

The American Cancer Society (ACS) says people near death sleep more and become hard to wake. NCI says they may withdraw, spend more time sleeping and answer questions slowly or not at all. This is a common part of the dying process. Conversation gets shorter and visitors may tire the person. It is not rejection, however much it stings.

NCI says that in the final days to hours of life, people often lose the desire to eat or drink. ACS says decreased eating and drinking is a normal part of the dying process and does not cause suffering. It also says forcing food or drink can cause discomfort.

NCI adds that supplemental nutrition does not benefit people in the last days of life and may raise the risk of fluid entering the lungs. Talk with the care team about the goals of care.

For comfort, offer ice chips or small sips of liquid. Gently clean the mouth with a soft toothbrush or foam swab.

Breathing can become irregular. NCI describes very shallow breathing, short pauses and deep, rapid breathing. ACS says pauses can last up to 30 seconds. Tell the nurse about any breathing change, because the team can help.

Mucus can build up and cause a rattling or gurgling sound. ACS says this is usually not uncomfortable for your loved one. NCI suggests raising the head of the bed, propping the person up with pillows or turning them onto either side. Medicines can reduce saliva.

Near the end, some people become restless, confused or upset, and may call out. Care teams call this terminal agitation or delirium. NCI says causes include pain, chemical imbalances, medicine side effects and dehydration, and that teams look for causes that can be treated. Report agitation rather than waiting it out.

ACS says arms and legs may feel cool, and the skin on the hands, feet, arms or legs may darken and look blue or blotchy. Urine may become darker and decrease. Use blankets for warmth. Do not use electric blankets or heating pads, because they can burn.

NCI says most people can still hear after they can no longer speak. ACS says to keep talking to the person. Say the ordinary things and assume you are heard.

If the person is on hospice, call the hospice first, day or night. NCI says hospice teams help manage symptoms and support care at home. If they are not on hospice, use the oncology after-hours number. Ask the team what medicines are at home for sudden symptoms, so nobody is waiting on a pharmacy at midnight.

• Call 911 or go to an emergency department if there is a seizure, heavy bleeding that will not stop, or sudden severe breathlessness or chest pain, and no hospice or on-call team can reach you quickly. New leg weakness, numbness around the groin and inner thighs, or loss of bladder or bowel control needs the same urgency, because delay can cost function. Do not drive yourself.
• Call the hospice or oncology team right away if there is sudden confusion or unusual sleepiness. High blood calcium can cause these and can be treated (ACS). If you cannot reach them, call 911.
• Call the hospice or oncology team the same day if pain is not settling on the prescribed medicines, breathlessness is worse, agitation cannot be calmed, there is repeated vomiting, a fall, or no urine passed.
• Call within a day or two if swallowing is becoming difficult, the mouth is dry and sore, skin over the hips or heels is breaking down, or the medicines that were working last week are no longer lasting between doses.

Nothing on that list is too small to call about at 3 a.m., and nobody on the other end will think you overreacted.

• NCI: Last days of life (PDQ)
• ACS: What to expect when someone is near death
• ACS: Hypercalcemia