Thinking about and planning for the end-of-life can be a difficult time for patients and their families. Each person will have unique needs and will cope in different ways. This time is easier when patients, families, and health care providers talk openly about end-of-life plans. For many patients and their families, this can be a time of personal growth. These events often give people the chance to find out more about themselves and appreciate what is most important to them.
This summary discusses care during the last days and last hours of life, including treatment of common symptoms and ethical questions that may come up. It may help patients and their families prepare for the kinds of decisions that may be needed during this time.
This summary is about end-of-life in adults with cancer and where noted, children with cancer.Making end-of-life plans can lower the stress on both the patient and the family.
When treatment choices and plans are discussed before the last days of life, it can lower the stress on both the patient and the family. Knowing the patient's wishes can help make it easier for family members to make major decisions for the patient during a very emotional time. It is most helpful if end-of life planning and decision-making begin soon after diagnosis and continue during the course of the disease. Having these decisions in writing can make the patient's wishes clear to both the family and the health care team. When it is a child who is terminally ill, having these discussions with the child's doctor may reduce the time the child spends in the hospital and help the parents feel more prepared for the child's end of life.
End-of-life planning usually includes making choices about the following:
The goal of palliative care is to improve the patient's and the family's quality of life by preventing and relieving suffering. This includes treating physical symptoms such as pain, and dealing with emotional, social, and spiritual concerns.
When palliative treatment is given at the end of life, care is taken to make sure the patient's wishes about treatments he or she wants to receive are followed.Hospice programs provide care given by experts on end-of-life issues.
Hospice is a program that gives care to people who are near the end of life and have stopped treatment to cure or control their cancer. Hospice care is usually meant for patients who are not expected to live longer than six months. Hospice care focuses on quality of life rather than length of life. The goal of hospice is to help patients live each day to the fullest by making them comfortable and relieving their symptoms. This may include palliative care to control pain and other symptoms so the patient can be as alert and comfortable as possible. Services to help and support the emotional, social, and spiritual needs of patients and their families are also an important part of hospice care.
Hospice programs are designed to keep a patient at home with family and friends, but hospice programs also provide services in hospice centers and in some hospitals and nursing home facilities. The hospice team includes doctors, nurses, spiritual advisors, social workers, nutritionists, and volunteers. Team members are specially trained on issues that occur at the end-of-life. After the patient's death, the hospice program continues to offer support, including grief or bereavement counseling.
In the last days, a patient may not be able to swallow pain medicine. When patients cannot take medicines by mouth, the pain medicine may be given by placing it under the tongue or into the rectum, by injection or infusion, or by placing a patch on the skin. These methods can be used at home with a doctor's order.Pain during the final hours of life can usually be controlled.
Opioid analgesics work very well to relieve pain and are commonly used at the end of life. Some patients worry that the use of opioids may cause death to occur sooner, but studies have shown no link between opioid use and early death.Myoclonic jerking may be a side effect of opioid use.
Myoclonic jerks are sudden muscle twitches or jerks that cannot be controlled by the person having them. A hiccup is one type of myoclonic jerk. Myoclonic jerking often occurs in the arms or legs. Taking very high doses of an opioid for a long time may cause this side effect, but it can have other causes as well. In patients taking opioids, it may begin with jerking movements that happen once in a while and then begin to happen more often. Rarely, there is constant jerking of different muscle groups all over the body.
When opioids are the cause of myoclonic jerking, changing to another opioid may help. Different patients respond to opioids in different ways and certain opioids may be more likely than others to cause myoclonic jerking in some people.
When the patient is very near death, medicine to stop the myoclonic jerking may be given instead of changing the opioid. When myoclonic jerking is severe, drugs may be used to calm the patient down, relieve anxiety, and help the patient sleep.Fatigue
Fatigue (feeling very tired) can have many causes at the end of life. These include physical and mental changes and side effects of treatments. Drugs that increase brain activity, alertness, attention, and energy may be helpful. (See the PDQ summary on Fatigue for more information.)Shortness of Breath
Shortness of breath or not being able to catch your breath is often caused by advanced cancer. Other causes include the following:
Very low doses of an opioid may relieve shortness of breath in patients who are not taking opioids for pain. Higher doses may be needed in patients who are taking opioids for pain or who have severe shortness of breath.
Other methods that may help patients who feel short of breath include the following:
In rare cases, shortness of breath may not be relieved by any of these treatments. Sedation with drugs may be needed, to help the patient feel more comfortable.
Some patients have spasms of the air passages in the lungs along with shortness of breath. Bronchodilators (drugs that open up small airways in the lungs) or steroid drugs (which relieve swelling and inflammation) may relieve these spasms.Cough
Chronic coughing at the end of life may add to a patient's discomfort. Repeated coughing can cause pain and loss of sleep, increase tiredness, and make shortness of breath worse. At the end of life, the decision may be to treat the symptoms of the cough rather than finding and treating the cause. The following types of drugs may be used to make the patient as comfortable as possible:
(See the PDQ summary on Cardiopulmonary Syndromes for more information.)Death Rattle
Rattle occurs when saliva or other fluids build up in the throat and airways in a patient who is too weak to clear the throat. There are two types of rattle. Death rattle is caused by saliva pooling at the back of the throat. The other kind of rattle is caused by fluid in the airways from an infection, a tumor, or excess fluid in body tissues.
Drugs may be given to decrease the amount of saliva in the mouth or to dry the upper airway. Since most patients with rattle are unable to swallow, these drugs are usually given in patches on the skin or by infusion.Non-drug treatments for rattle include changing the patient's position and giving less fluid.
Raising the head of the bed, propping the patient up with pillows, or turning the patient to either side may help relieve rattle. If the rattle is caused by fluid at the back of the throat, excess fluid may be gently removed from the mouth using a suction tube. If the rattle is caused by fluid in the airways, the fluid is usually not removed by suction. Suctioning causes severe physical and mental stress on the patient.
At the end of life, the body needs less food and fluid. Reducing food and fluids can lessen the excess fluid in the body and greatly relieve rattle.Death rattle is a sign that death may soon occur.
Death rattle is a sign that death may occur in hours or days. Rattle can be very upsetting for those at the bedside. It does not seem to be painful for the patient.Delirium
Delirium is common during the final days of life. Some patients may be confused, nervous, and restless, and have hallucinations (see or hear things not really there). Other patients may be quiet and withdrawn. (See the PDQ summary on Cognitive Disorders and Delirium for more information.)
Depending on the cause of the delirium, treatment may include the following:
For some patients in the last hours of life, the decision may be to treat only the symptoms of delirium and make the patient as comfortable as possible. There are drugs that work very well to relieve these symptoms.Hallucinations that are not related to delirium often occur at the end of life.
It is common for dying patients to have hallucinations that include loved ones who have already died. It is normal for family members to feel distress when these hallucinations occur. Speaking with clergy, the hospital chaplain, or other religious advisors is often helpful.Fever
Fever and infections are common at the end-of-life. Because patients often have many medical problems at the end of life, it can be hard to know the cause of a fever and if treatment will help the patient. Patients near the end of life may choose not to treat the cause of the fever but only to receive comfort measures, such as acetaminophen.Hemorrhage
Hemorrhage (a lot of bleeding in a short time) is rare but may occur in the last hours or minutes of life. Blood vessels may be damaged by certain cancers or cancer treatments. Radiation therapy, for example, can weaken blood vessels in the area that was treated. Tumors can also damage blood vessels. Patients with the following conditions are at risk for this symptom:
The patient should talk with the doctor about any concerns he or she has about the chance of hemorrhage.Making the patient comfortable is the main goal of care during hemorrhage at the end of life.
When hemorrhage occurs during cancer care, it is treated with bandages and medicines or with treatments such as radiation therapy, surgery, and blood transfusions. When sudden bleeding occurs at the end of life, however, patients usually die soon afterwards. Resuscitation (restarting the heart) usually will not work. The main goal of care is to help the patient be calm and comfortable and to support family members. If hemorrhage occurs, it can be very upsetting for family members. It is helpful if the family talks about the feelings this causes and asks questions about it.
The following steps can be taken when bleeding occurs in the last hours of life:
Fast-acting drugs may help calm the patient during this time.
In addition to decisions about treating symptoms at the end-of-life, it is also helpful for patients to decide if and when they want this treatment to stop. A patient may wish to receive all possible treatments, only some treatments, or no treatment at all. These decisions may be written down ahead of time in an advance directive, such as a living will. Advance directive is the general term for different types of legal documents that describe the treatment or care a patient wishes to receive or not receive when he or she is no longer able to speak their wishes.
The patient may also name a healthcare proxy to make these decisions when he or she becomes unable to do so. Having advance directives in place makes it easier for family members and caregivers when very important decisions have to be made in the last days, such as whether to give nutrition support, restart the heart, help with breathing, or give sedatives.
When the patient does not make choices about end-of-life care, or does not share his choices with family members, health care proxies, or the health care team, treatment may be given near death against the patient's wishes. As a result, studies show that the patient's quality of life may be worse and the family's grieving process may be more difficult.
Studies have shown that cancer patients who have end-of-life discussions with their doctors choose to have fewer procedures, such as resuscitation or the use of a ventilator. They are also less likely to be in intensive care, and the cost of their health care is lower during their final week of life. Reports from their caregivers show that these patients live as long as patients who choose to have more procedures and that they have a better quality of life in their last days.Nutrition Support
Nutrition support can improve health and boost healing during cancer treatment. The goals of nutrition therapy for patients during the last hours of life are different from the goals for patients in active cancer treatment and recovery. In the final days of life, patients often lose the desire to eat or drink and may refuse food or fluids that are offered to them. Also, procedures used to put feeding tubes in place and problems that can occur with these types of feedings may be hard on a patient.Making plans for nutrition support in the last days is helpful.
The goal of end-of-life care is to prevent suffering and relieve symptoms. If nutrition support causes the patient more discomfort than help, then nutrition support near the end of life may be stopped. The needs and best interests of each patient guide the decision to give nutrition support. When decisions and plans about nutrition support are made by the patient, doctors and family members can be sure they are doing what the patient wants.Two types of nutrition support are commonly used.
If the patient cannot swallow, two types of nutrition support are commonly used:
An important decision for the patient to make is whether to have cardiopulmonary resuscitation (CPR) (trying to restart the heart and breathing when it stops). It is best if patients talk with their family, doctors, and caregivers about their wishes for CPR as early as possible (for example, when being admitted to the hospital or when active cancer treatment is stopped). A do-not-resuscitate (DNR) order is written by a doctor to tell other health professionals not to perform CPR at the moment of death, so that the natural process of dying occurs. If the patient wishes, he or she can ask the doctor to write a DNR order. The patient can ask that the DNR order be changed or removed at any time.Ventilator Use
A ventilator is a machine that helps patients breathe. Sometimes, using a ventilator will not improve the patient's condition, but will keep the patient alive longer. If the goal of care is to help the patient live longer, a ventilator may be used, according to the patient's wishes. If ventilator support stops helping the patient or is no longer what the patient wants, the patient, family, and health care team may decide to turn the ventilator off.
Some patients may want to be allowed to die when breathing gets difficult or stops. It is important for the patient to tell family members and health care providers, before breathing becomes difficult, of his or her wishes about being kept alive with a ventilator.Before a ventilator is turned off, family members will be given information about what to expect.
Family members will be given information about how the patient may respond when the ventilator is removed and about pain relief or sedation to keep the patient comfortable. Family members will be given time to contact other loved ones who wish to be there. Chaplains or social workers may be called to give help and support to the family.Sedation
The decision whether to sedate a patient at the end of life is a difficult one. Sedation may be considered for a patient's comfort or for a physical condition such as uncontrolled pain. Palliative sedation may be temporary. A patient's thoughts and feelings about end-of-life sedation may depend greatly on his or her own culture and beliefs. Some patients who become anxious facing the end of life may want to be sedated. Other patients may wish to have no procedures, including sedation, just before death.
It is important for the patient to tell family members and health care providers of his or her wishes about sedation at the end of life. When patients make their wishes about sedation known ahead of time, doctors and family members can be sure they are doing what the patient would want. Families may need support from the health care team and mental health professionals while palliative sedation is used.
Most people are not familiar with the signs that death is near. Knowing what to expect can prepare them for the death of their loved one and make this time less stressful and confusing. Health care providers can give family members information about the changes they may see in their loved one in the final hours and how they may help their loved one through it.Patients often lose the desire to eat or drink in the final days or hours.
In the final days to hours of life, patients often lose the desire to eat or drink, and may refuse food and fluids that are offered to them. The family may give ice chips or swab the mouth and lips to keep them moist. Forcing food and fluids can make the patient uncomfortable or cause choking. Family members may find other ways to show their love for the patient, such as massage.Patients near death may not respond to others.
Patients may withdraw and spend more time sleeping. They may answer questions slowly or not at all, seem confused, and show little interest in their surroundings. Most patients are still able to hear after they are no longer able to speak. It may give some comfort if family members continue to touch and talk to the patient, even if the patient does not respond.A number of physical changes are common when the patient is near death.
Some of the following physical changes may occur in the patient at the end of life:
After the patient dies, family members and caregivers may wish to stay with the patient a while. There may be certain customs or rituals that are important to the patient and family at this time. These might include rituals for coping with death, handling the patient's body, making final arrangements for the body, and honoring the death. The patient and family members should let the health care team know about any customs or rituals they want performed after the patient's death.
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