Preparing for the Last Weeks of Life With Cancer

Nobody can give you a date. What can be described is the order in which things usually change. Knowing the order takes some of the fear out of each new thing.

The National Cancer Institute is careful to add a warning that belongs at the top: these signs and changes "don't always occur in everyone. For this reason, it may be hard to know when a person is near death."

With weeks left, the changes are mostly about energy and interest. Sleep takes up more of the day. Appetite drops. Walking to the bathroom becomes the hardest task of the morning. Swallowing liquids gets harder for some people. This is the stretch when there is still room to do things that matter.

With days left, the person is awake less and answers more slowly. In one study of people in palliative care units, the share who could still communicate fell from 80 percent to 39 percent over the last seven days. Urine output drops and darkens. Skin on the hands and feet becomes blotchy, cold, or blue.

With hours left, breathing becomes irregular, the pulse gets hard to find at the wrist, and the color in the hands and feet changes. The rattling sound in the throat usually begins about a day before death, though the range is wide.

Near the end, people stop wanting food and fluids. This is not the cause of what is happening. It is part of it.

The National Cancer Institute's instruction is unambiguous: "Food and fluids should not be forced on the person because it can cause discomfort or choking."

What to do instead: offer sips of water or ice chips, and swab the mouth and lips to keep them moist. Dry mouth is a real discomfort, and it is fixable. People at this stage rarely report feeling hungry.

On intravenous fluids, the National Cancer Institute says the goals "should be discussed by patient, family, and doctors," and that giving fluids "has not been shown to help patients live longer or improve their quality of life," though the harms are minor. In NCI's summary for clinicians, people who received more than 500 mL of IV fluid in the week before death had a higher risk of developing the rattling breathing within 48 hours of death. Tube feeding at this stage has no known benefit and may raise the risk of aspiration and infection.

Feeding someone is how families show love. Ask the team for other ways to do that: mouth care, a cool cloth, hand massage, reading aloud.

Breathing "may become irregular, with very shallow breathing, short periods of not breathing, or deep, rapid breathing." Pauses can last long enough to frighten anyone watching.

The rattling sound happens when saliva and other fluids collect in the throat and the person is too weak to clear it. NCI's summary for clinicians puts it at 50 to 60 percent of people. Raising the head of the bed, propping the person with pillows, or turning them onto either side often relieves it.

It is a sign that death may come within hours or days.

For shortness of breath, the National Institute on Aging suggests opening a window, using a humidifier, or running a fan to move air in the room. Medicines help too.

Delirium is common. NCI's clinician summary puts it at 50 to 90 percent of people before death. Someone may become withdrawn and drowsy, or restless and agitated, and may switch between the two.

Hallucinations are common too. As the National Cancer Institute notes, "It is common for people near death to have hallucinations that include loved ones who have already died." You do not have to correct these.

Two practical things. First, people who are confused or agitated need to be protected from falls and injury. Second, there are drugs that work well for these symptoms, so this is a call to the team, not something to endure.

Pain affects 30 to 75 percent of people in the last days of life, and it is treatable.

The first fear is addiction. The National Cancer Institute separates the two ideas: "Tolerance of an opioid is a physical dependence on it. This is not the same as addiction (psychological dependence)." The National Institute on Aging tells caregivers not to be afraid of giving as much pain medicine as the doctor prescribed.

The second fear is that morphine will shorten life. The National Cancer Institute answers it directly: "Some patients and family members worry that the use of opioids may cause death to occur sooner, but studies have shown no link between opioid use and early death."

Pain is easier to prevent than to relieve. Give the scheduled doses on schedule, and use the breakthrough dose when it is needed rather than waiting to see if the pain passes.

"Most people are still able to hear after they are no longer able to speak."

The advice that follows is simple. "It may give some comfort if family members continue to touch and talk to the person, even if they do not respond." Say what you want to say. Assume it lands.

Withdrawal is expected. People sleep more, answer slowly or not at all, and lose interest in what is going on around them. That is not rejection.

Several of these can only be done now.

• Advance directives. A living will says how you want to be treated. A durable power of attorney for health care names the person who speaks for you. A lawyer can help but is not required.
• A POLST or MOLST form, which is a medical order clinicians can act on immediately in an emergency, alongside the advance directive.
• The written symptom plan, with which medicines to use for pain, breathing, nausea, and restlessness, and at what point to call.
• The after-hours number, and who answers it.
• Which funeral home you will call. The National Institute on Aging says that if the person was in hospice, a plan for what happens after death will likely already be in place; if death happens at home without hospice, it advises talking in advance with the doctor, the local medical examiner or coroner, your local health department, or a funeral home representative about how to proceed.
• Any customs or rituals that matter to the person and family. Tell the health care team in advance.
• Decisions about visitors: who, when, and how long. Also what children will be told and whether they will be present.

Medicare hospice covers inpatient respite care for up to 5 consecutive days at a time, in an approved facility, specifically so the caregiver can rest. Ask how much notice the hospice needs. Many families find out this exists only after they are past the point of using it.

• Call 911 or go to an emergency department if no hospice is involved and there is choking, heavy bleeding, or breathing has stopped. If hospice is in place, call the hospice line first. A 911 crew may start treatment the person had already said they did not want.
• Call your care team the same day if pain is not controlled by the medicines in the house. The same goes for breathing that looks distressing when the usual measures are not working, agitation or fear that cannot be settled, vomiting that stops medicines staying down, or any new symptom you have no instruction for.
• Call your care team within a day or two if the caregiver cannot safely keep doing what the plan requires.

Hospice has a nurse and doctor on call 24 hours a day, 7 days a week. Calling at 3 a.m. is what the service is for.

Families often want to sit with the person for a while. There is no rush. The death does have to be officially pronounced, and the National Institute on Aging is specific about who does that: "a doctor in a hospital or nursing facility or a hospice nurse." That person also completes the forms recording the cause, time, and place of death.

If hospice is involved, the plan for what happens next is already written down. Ask for it now, so nobody has to find it later.

• Last Days of Life (PDQ) Patient Version — National Cancer Institute
• Last Days of Life (PDQ) Health Professional Version — National Cancer Institute
• Cancer Pain (PDQ) Patient Version — National Cancer Institute
• End-of-Life Care for People Who Have Cancer — National Cancer Institute
• Providing Care and Comfort at the End of Life — National Institute on Aging
• What To Do After Someone Dies — National Institute on Aging
• Advance Care Planning: Advance Directives for Health Care — National Institute on Aging
• Hospice care coverage — Medicare.gov
• Hospice levels of care — Centers for Medicare and Medicaid Services