Physical changes in the last days of life

Call 911 if there is sudden heavy bleeding, or if the person is in obvious severe distress and you have no hospice or palliative team you can reach. If a hospice plan is in place, call the hospice number first. That team can usually respond faster, and in line with the person's wishes.

Call your care team the same day if pain, breathlessness, or cough is not controlled by the medicines you have, if the person becomes confused or agitated in a way that risks harm to themselves, or if swallowing has become impossible so medicines can no longer be taken by mouth. NCI notes that when swallowing is not possible, medicine can be given rectally, by injection or infusion, or through a skin patch. But that change has to be arranged by the team, not tried at home on your own.

Families sitting with someone in the final days are watching a body do things they have never seen before, with no way to know what is expected and what is an emergency.

NCI's guidance for patients and families lays out the changes that commonly happen. Knowing them ahead of time will not make the days easier, but it removes one layer of fear: the fear that comes from not knowing whether what you are seeing is normal.

NCI describes breathing that becomes irregular: very shallow breaths, short pauses with no breathing at all, or deep, fast breathing. Shortness of breath is common and may get worse.

Families almost always find the pauses frightening. They are part of the normal pattern NCI describes, not a sign that something has gone wrong.

Fluid can collect in the airway when a person is too weak to clear it, causing the sound often called a death rattle. NCI notes this may mean death could happen within hours or days.

Comfort steps NCI describes include repositioning the person for the rattle, and pointing a cool fan at the face when breathing feels hard. For breathlessness, it also suggests trying a change of position in bed.

Hands and feet may turn blotchy, cold, or blue. Heart rate may speed up or slow down and become irregular, and blood pressure usually drops.

For warmth, NCI's guidance suggests using blankets, and specifically advises against electric blankets.

NCI states plainly that people often lose the desire to eat or drink. They may turn away from food and fluids that are offered, or keep their teeth clenched shut.

This is one of the hardest things for families, because feeding someone has been a way of showing love for a lifetime. NCI advises against forcing food or fluids, noting it can cause discomfort or choking. Its clinical summary adds that forcing intake can lead to fluid getting into the lungs.

What it suggests instead: offer ice chips, or wipe the mouth and lips with something moist. Dry mouth is a real source of discomfort, and this step helps with that directly.

Not eating is part of dying. It is not a cause of it.

Less urine is passed, and what there is may look dark. NCI's clinical summary lists lower urine output as one of the changes seen in the final days.

People withdraw, sleep more, answer slowly, or stop answering at all. They may seem confused. Some become agitated or see things that are not there, and NCI notes that people near death should be kept safe from accidents or from hurting themselves while confused.

The single most important line in NCI's guidance for families is this: most people can still hear even after they can no longer speak.

That is why NCI encourages families to keep touching and talking to the person even when there is no response, and why its clinical guidance tells doctors and nurses to encourage loved ones to speak to the patient as if they can hear.

Brief moments of clarity can happen too. NCI's clinical summary notes these moments are limited and pass quickly. They are not necessarily caused by medicines, and they are not a sign of getting better.

NCI describes other ways to give medicine when a person can no longer swallow: placed in the rectum, given by injection or infusion, or delivered through a skin patch. Comfort care continues. Only the method of giving medicine changes.

NCI attaches an important warning to all of this: these signs and changes do not always happen to everyone. That is part of why it can be hard to know when a person is near death.

If what you are seeing does not match this list exactly, that does not mean something has been missed. It means bodies are different, even now.

NCI's summary notes that caregiver distress is sometimes greater than the patient's own distress. That is why it describes early, ongoing support for the caregiver as very important. Hospice teams, including nurses, chaplains, counsellors, and home health aides, exist for the family as well as for the person in the bed.