People who have already discussed their wishes for end-of-life care with their loved ones feel less stress at the end of their life, and so do their families.
Advance directives are legal documents that record a person’s wishes for end-of-life care.
Research has shown that hospice care may improve the quality of life of a cancer patient who is dying and of the patient’s family.
When a cancer patient’s health care team determines that the cancer can no longer be controlled, medical testing and cancer treatment often stop. But the person’s care continues, with an emphasis on improving their quality of life and that of their loved ones, and making them comfortable for the following weeks or months.Medicines and treatments people receive at the end of life can control pain and other symptoms, such as constipation, nausea, and shortness of breath. Some people remain at home while receiving these treatments, whereas others enter a hospital or other facility. Either way, services are available to help patients and their families with the medical, psychological, social, and spiritual issues around dying. Hospice programs are the most comprehensive and coordinated providers of these services.The period at the end of life is different for each person. The signs and symptoms people have vary as their illness continues, and each person has unique needs for information and support. Questions and concerns that family members have about the end of life should be discussed with each other, as well as with the health care team, as they arise.Communication about end-of-life care and decision making during the final months of a person’s life are very important. Research has shown that if a person who has advanced cancer discusses his or her options for care with a doctor early on, that person’s level of stress decreases and their ability to cope with illness increases. Studies also show that patients prefer an open and honest conversation with their doctor about choices for end-of-life care early in the course of their disease, and are more satisfied when they have this talk.Experts strongly encourage patients to complete advance directives, which are documents stating a person’s wishes for care. They also designate who the patient chooses as the decision-maker for their care when they are unable to decide. It’s important for people with cancer to have these decisions made before they become too sick to make them. However, if a person does become too sick before they have completed an advance directive, it’s helpful for family caregivers to know what type of care their loved one would want to receive. More information about advance directives can be found below in the Related Resources section of this fact sheet.
How do doctors know how long a person will continue to live?
- The patient is in pain that is not relieved by the prescribed dose of pain medication.
- The patient is experiencing onset of new symptoms, such as nausea, vomiting, increasing confusion, anxiety or restlessness.
- The patient is experiencing symptoms that were previously well controlled.
- The patient shows discomfort, such as by grimacing or moaning.
- The patient is having trouble breathing and seems upset.
- The patient is unable to urinate or empty the bowels.
- The patient has fallen.
- The patient is very depressed or talking about committing suicide.
- The caregiver has difficulty giving medicines to the patient.
- The caregiver is overwhelmed by caring for the patient, is too sad, or is afraid to be with the patient.
- The caregiver doesn’t know how to handle a certain situation.
Keep in mind that palliative care experts can be called upon by the patient’s physician at any point in the person’s illness to help with these issues. They are increasingly available not only in the hospital, but also in the outpatient setting.
- Keep the person company. Talk, watch movies, read, or just be with him or her.
- Allow the person to express fears and concerns about dying, such as leaving family and friends behind. Be prepared to listen.
- Be willing to reminisce about the person’s life.
- Avoid withholding difficult information. Most patients prefer to be included in discussions about issues that concern them.
- Reassure the patient that you will honor advance directives, such as living wills.
- Ask if there is anything you can do.
- Respect the person’s need for privacy.
- Support the person’s spirituality. Let them talk about what has meaning for them, pray with them if they’d like, and arrange visits by spiritual leaders and church members, if appropriate. Keep objects that are meaningful to the person close at hand.
What are some topics patients and family members can talk about?
- What are the happiest and saddest times we have shared together?
- What are the defining or most important moments of our life together?
- What are we most proud of?
- What have we taught each other?
Patients with serious, life-threatening illness have stated that being positive or adding humor remains an important outlet for them. Even at this challenging moment, laughter may still be the best medicine.
- Digestive system: If cancer is in the digestive system (e.g., stomach, pancreas, or colon), food or waste may not be able to pass through, causing bloating, nausea, or vomiting. If the cancer prevents food from being digested or absorbed, patients can also become malnourished.
- Lungs: If too little healthy lung tissue is left, or if cancer blocks off part of the lung, the person may have trouble breathing and getting enough oxygen. Or, if the lung collapses, it may become infected, which may be too hard for someone with advanced cancer to fight.
- Bones: If cancer is in the bones, too much calcium may go into the bloodstream, which can cause unconsciousness and death. Bones with tumors may also break and not heal.
- Liver: The liver removes toxins from the blood, helps digest food, and converts food into substances needed to live. If there isn’t enough healthy liver tissue, the body’s chemical balance is upset. The person may eventually go into a coma.
- Bone marrow: When cancer is in the bone marrow, the body can’t make enough healthy blood cells. A lack of red blood cells will cause anemia, and the body won’t have enough oxygen in the blood. A low white blood cell count will make it hard to fight infection. And a drop in platelets will prevent the blood from clotting, making it hard to control abnormal bleeding.
- Brain: A large tumor in the brain may cause memory problems, balance problems, bleeding in the brain, or loss of function in another body part, which may eventually lead to a coma.
In some cases, the exact cause can’t be pinpointed and patients simply decline slowly, becoming weaker and weaker until they succumb to the cancer.
Again, every patient is different and all processes have different stages and rates in which they advance. And some conditions have treatments that can help slow the process or make the patient more comfortable. It’s very important to keep having conversations with the patient’s health care team.
- People often focus inward during the last weeks of life. This doesn’t necessarily mean that patients are angry or depressed or that they don’t love their caregivers. It could be caused by decreased oxygen to the brain, decreased blood flow, and/or mental preparation for dying.
- They may lose interest in things they used to enjoy, such as favorite TV shows, friends, or pets.
- Caregivers can let the patient know they are there for support. The person may be aware and able to hear, even if they are unable to respond. Experts advise that giving them permission to “let go” may be helpful. If they do feel like talking, they may want to reminisce about joys and sorrows, or tie up loose ends.
- People may have drowsiness, increased sleep, intermittent sleep, or confusion when they first wake up.
- Worries or concerns may keep patients up at night. Caregivers can ask them if they would like to sit in the room with them while they fall asleep.
- Patients may sleep more and more as time passes. Caregivers should continue to talk to them, even if they’re unconscious, for the patient may still hear them.
- It may become harder to control pain as the cancer gets worse. It’s important to provide pain medication regularly. Caregivers should ask to see a palliative care doctor or a pain specialist for advice on the correct medicines and doses. It may be helpful to explore other pain control methods such as massage and relaxation techniques.
- Weakness and fatigue will increase over time. The patient may have good days and bad days, so they may need more help with daily personal care and getting around.
- Caregivers can help patients save energy for the things that are most important to them.
- As the body naturally shuts down, the person with cancer will often need and want less food. The loss of appetite is caused by the body’s need to conserve energy and its decreasing ability to use food and fluids properly.
- Patients should be allowed to choose whether and when to eat or drink. Caregivers can offer small amounts of the foods the patient enjoys. Since chewing takes energy, they may prefer milkshakes, ice cream, or pudding. If the patient doesn’t have trouble with swallowing, offer sips of fluids and use a flexible straw if they can’t sit up. If a person can no longer swallow, offer ice chips. Keep their lips moist with lip balm and their mouth clean with a soft, damp cloth.
- Near the end of life, people often have episodes of confusion or waking dreams. They may get confused about time, place, and the identity of loved ones. Caregivers can gently remind patients where they are and who is with them. They should be calm and reassuring. But if the patient is agitated, they should not attempt to restrain them. Let the health care providers know if significant agitation occurs, as there are treatments available to help control or reverse it.
- Sometimes patients report seeing or speaking with loved ones who have died. They may talk about going on a trip, seeing lights, butterflies, or other symbols of reality we can’t see. As long as these things aren’t disturbing to the patient, caregivers can ask them to say more. They can let them share their visions and dreams, not trying to talk them out of what they believe they see.
The dying process:
- There may be a loss of bladder or bowel control due to the muscles relaxing in the pelvis. Caregivers should continue to provide clean, dry bedding and gentle personal care. They can place disposable pads on the bed under the patient and remove them when soiled. Also, due to a slowing of kidney function and/or decreased fluid intake, there may be a decrease in the amount of urine. It may be dark and smell strong.
- Breathing patterns may become slower or faster, in cycles. The patient may not notice, but caregivers should let the doctor know if they are worried about the changes. There may be rattling or gurgling sounds that are caused by saliva and fluids collecting in the throat and upper airways. Although this can be very disturbing for caregivers, at this stage the patient is generally not experiencing any distress. Breathing may be easier if a person’s body is turned to the side and pillows are placed behind the back and beneath the head. Caregivers can also ask the health care team about using a humidifier or external source of oxygen to make it easier for the patient to breathe, if the patient is short of breath.
- Skin may become bluish in color and feel cool as blood flow slows down. This is not painful or uncomfortable for the patient. Caregivers should avoid warming the patient with electric blankets or heating pads, which can cause burns. However, they may keep the patient covered with a light blanket.
What are the signs that the person has died?
- The person is no longer breathing and doesn’t have a pulse.
- Their eyes don’t move or blink, and the pupils are dilated (enlarged). The eyelids may be slightly open.
- The jaw is relaxed and the mouth is slightly open.
- The body releases the bowel and bladder contents.
- The person doesn’t respond to being touched or spoken to.
- The person’s skin is very pale and cool to the touch.
What needs to be done after the person has died?
- Place the body on its back with one pillow under the head. If necessary, caregivers or family members may wish to put the person’s dentures or other artificial parts in place.
- If the person is in a hospice program, follow the guidelines provided by the program. A caregiver or family member can request a hospice nurse to verify the death.
- Contact the appropriate authorities in accordance with local regulations. Contact the person’s doctor and funeral home.
- When the patient’s family members are ready, call other family members, friends, and clergy.
- Provide or obtain emotional support for family members and friends to cope with their loss.