Posted Date: Sep 30, 2015
Expert-reviewed information summary about care during the last days to last hours of life, including common symptoms, ethical dilemmas that may arise, and the role of the oncologist in caring for patients and their families during this time.
This PDQ cancer information summary has current information about patient care during the last days to last hours of life. It is meant to inform and help patients, families, and caregivers. It does not give formal guidelines or recommendations for making decisions about health care.
Editorial Boards write the PDQ cancer information summaries and keep them up to date. These Boards are made up of experts in cancer treatment and other specialties related to cancer. The summaries are reviewed regularly and changes are made when there is new information. The date on each summary ("Date Last Modified") is the date of the most recent change. The information in this patient summary was taken from the health professional version, which is reviewed regularly and updated as needed, by the PDQ Supportive and Palliative Care Editorial Board.
The end of life may be months, weeks, days, or hours. It is a time when many decisions about treatment and care are made for patients with cancer. It is important for families and healthcare providers to know the patient's wishes ahead of time and to talk with the patient openly about end-of-life plans. This will help make it easier for family members to make major decisions for the patient at the end of life.
When treatment choices and plans are discussed before the end of life, it can lower the stress on both the patient and the family. It is most helpful if end-of life planning and decision-making begin soon after the cancer is diagnosed 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 healthcare team.
When a child is terminally ill, end-of-life discussions with the child's doctor may reduce the time the child spends in the hospital and help the parents feel more prepared.
This summary is about end of life in adults with cancer and where noted, children with cancer. It 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 decisions that they need to make during this time.
See the PDQ summary on Planning the Transition to End-of-Life Care in Advanced Cancer for more information on end-of-life planning, including palliative and hospice care.
Most people don't know the signs that show death is near. Knowing what to expect can help them get ready for the death of their loved one and make this time less stressful and confusing. Healthcare 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 this.
In the final days to hours of life, patients often lose the desire to eat or drink, and may not want food and fluids that are offered to them. The family may give ice chips or swab the mouth and lips to keep them moist. Food and fluids should not be forced on the patient. This can make the patient uncomfortable or cause choking.
Patients may withdraw and spend more time sleeping. They may answer questions slowly or not at all, seem confused, and may not be interested in what's going on around them. 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.
Certain 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 healthcare team know about any customs or rituals they want performed after the patient's death.
Common symptoms at the end of life include the following:
Delirium is common during the final days of life. Most patients have a lower level of consciousness. They may be withdrawn, be less alert, and have less energy. Some patients may be agitated or restless, and have hallucinations (see or hear things not really there). Patients should be protected from having accidents or hurting themselves when they are confused or agitated. See the PDQ summary on Delirium for more information.
Delirium can be caused by the direct effects of cancer, such as a growing tumor in the brain. Other causes include the following:
Depending on the cause of the delirium, doctors may do 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.
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 may help.
Fatigue (feeling very tired) is one of the most common symptoms in the last days of life. A patient's fatigue may become worse every day during this time. Drowsiness, weakness, and sleep problems may occur. Drugs that increase brain activity, alertness, and energy may be helpful. See the PDQ summary on Fatigue for more information.
Shortness of breath or not being able to catch your breath is often caused by advanced cancer. Other causes include the following:
Opioids may relieve shortness of breath in patients. 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.
Other ways to 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.
In the last days of life, 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.
Opioid analgesics work very well to relieve pain and are commonly used at the end of life. 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. See the PDQ summary on Pain for more information about opioids.
Chronic cough 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 to find and treat 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.
Patients with cancer may have constipation in the last days of life. Patients who have trouble swallowing may not be able to take laxatives by mouth. If needed, laxatives may be given rectally to treat constipation and make the patient comfortable.
Patients with cancer may have trouble swallowing in the last days of life. Both fluids and food may be hard to swallow, causing a loss of appetite, weight loss and muscle wasting, and weakness. Small amounts of food that the patient enjoys may be given if they want to eat. Supplemental nutrition does not benefit patients in the last days of life and may increase the risk of aspiration and infections.
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 extra 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 by infusion.
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, the 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, because it 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 extra fluid in the body and greatly relieve rattle.
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 and is not the same as shortness of breath.
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. Brief, shock-like jerks can occur in one or more different muscle groups anywhere in the body. Taking very high doses of an opioid for a long time may cause this side effect, but it can have other causes as well.
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.
Treatment of fever in the last days of life depends on whether it causes the patient distress or discomfort. Fever may be caused by infection, medicines, or the cancer itself. While infections may be treated with antibiotics, patients near the end of life may choose not to treat the cause of the fever.
Hemorrhage (heavy 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 have an increased risk of hemorrhage:
The patient and family should talk with the doctor about any concerns they have about the chance of hemorrhage.
It is hard to know when hemorrhage might occur. When sudden bleeding occurs at the end of life, patients usually become unconscious and die soon afterwards. Resuscitation (restarting the heart) usually will not work.
The main goal of care is to help the patient be 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.
Decisions about whether to continue or stop chemotherapy are made by the patient and doctor together. About one-third of patients with advanced cancer continue to receive chemotherapy or other treatment near the end of life.
Treatment with chemotherapy at this time can result in the following:
However, some patients with cancer choose to continue chemotherapy because they feel it helps them to live in the present and focus on active treatment. Other patients choose palliative or comfort care to treat pain and other symptoms. These decisions are based on the patient's goals of care and the likely risks and benefits of treatment.
Hospice care is an important end-of-life option for patients with advanced cancer. Patients may feel that beginning hospice care means they have given up. Some patients fear losing the relationship with their oncologist. However, many patients and caregivers feel they receive important benefits from hospice care.
Patients who receive hospice care seem to have the following:
Hospice-related services include:
Doctors, patients, and caregivers should discuss hospice care and when it should begin.
When hospice benefits are covered by Medicare, physicians are required to certify that patients are not expected to live more than 6 months and that patients are not being treated to be cured. Other policies may be different, depending on the hospice and the state.
Many patients with advanced cancer wish to die at home. Patients who die at home with hospice services and support seem to have better symptom control and quality of life. They also feel better prepared for death than patients who die in a hospital or intensive care unit. Grieving caregivers have less trouble adjusting to their loss and feel they have honored the patient's wishes when their loved one dies at home.
Patients who get hospice care are more likely to be able to die at home. Hospice care can help control the patient's symptoms and give the caregiver the help they need.
However, not all patients choose to die at home. It is important for the patient, caregivers, and doctors to discuss where the patient wishes to die and the best way to fulfill the patient's decision.
Decisions about whether to use life-sustaining treatments that may extend life in the final weeks or days cause a great deal of confusion and anxiety. Some of these treatments are ventilator use, parenteral nutrition, and dialysis.
Patients may be guided by their oncologist, but have the right to make their own choices about life-sustaining treatments. The following are some of the questions to discuss:
A patient may wish to receive all possible treatments, only some treatments, or no treatment at all in the last days of life. 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.
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 healthcare 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.
See the PDQ summary on Planning the Transition to End-of-Life Care in Advanced Cancer for more information.
A spiritual assessment is a method or tool used by doctors to understand the role that religious and spiritual beliefs have in the patient's life. This may help the doctor understand how these beliefs affect the way the patient copes with cancer and makes decisions about cancer treatment.
Serious illnesses like cancer may cause patients or family caregivers to have doubts about their beliefs or religious values and cause spiritual distress. Some studies show that patients with cancer may feel anger at God or may have a loss of faith after being diagnosed. Other patients may have feelings of spiritual distress when coping with cancer. Spiritual distress may affect end-of-life decisions and increase depression.
Doctors and nurses, together with social workers and psychologists, may be able to offer care that supports a patient's spiritual health. They may encourage patients to meet with their spiritual or religious leaders or join a spiritual support group. This may improve patients' quality of life and ability to cope. When patients with advanced cancer receive spiritual support from the medical team, they are more likely to choose hospice care and less aggressive treatment at the end of life.
See the PDQ summary on Spirituality in Cancer Care for more information.
Decisions about giving fluids should be based on the patient's goals of care. Giving fluids has not been shown to help patients live longer or to improve quality of life. However, the harms are minor and the family may feel there are benefits if the patient is less fatigued and more alert.
The family may also be able to give the patient sips of water or ice chips, or swab the mouth and lips to keep them moist.
Nutrition support can improve health and boost healing during cancer treatment. The goals of nutrition therapy for patients during the last days 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 not want food or fluids that are offered to them. Also, procedures used to put in feeding tubes may be hard on a patient.
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.
If the patient cannot swallow, two types of nutrition support are commonly used:
Each type of nutrition support has benefits and risks. See the PDQ summary on Nutrition in Cancer Care for more information.
The use of antibiotics and other treatments for infection is common in patients in the last days of life, but it is hard to tell how well they work. It is also hard to tell if there are any benefits of using antibiotics at the end of life.
Overall, doctors want to make the patient comfortable in the last days of life rather than give treatments that may not help them live longer.
Many patients with advanced cancer have anemia. Patients with advanced blood cancers may have thrombocytopenia (a condition in which there is a lower-than-normal number of platelets in the blood). Deciding whether to use blood transfusions for these conditions is based on the following:
The decision is hard to make since patients usually need to receive transfusions in a medical setting rather than at home.
Many patients are used to receiving blood transfusions during active treatment or supportive care, and may want to continue transfusions to feel better. However, studies have not shown that transfusions are safe and effective at the end of life.
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.
Near the end of life, patients with advanced cancer may be admitted to a hospital or intensive care unit (ICU) if they have not made other choices for their care. In the ICU, patients or family members have to make hard decisions about whether to start, continue, or stop aggressive treatments that may make the patient live longer, but do not improve the patient's quality of life. Families may be unsure of their feelings or have trouble deciding whether to limit or avoid treatments.
Sometimes, treatments like dialysis or blood transfusions may be tried for a short time. However, at any time, patients or families may talk with doctors about whether they want to continue with ICU care. They may choose instead to change over to comfort care in the final days.
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 healthcare team may decide to turn the ventilator off.
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.
Patients and caregivers share the distress of cancer, with the caregiver's distress sometimes being greater than the patient's. Since caregiver suffering can affect the patient's well-being and the caregiver's adjustment to loss, early and constant support of the caregiver is very important.
The decision whether to sedate a patient at the end of life is a hard 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.
Studies have not shown that palliative sedation shortens life when used in the last days.
It is important for the patient to tell family members and healthcare 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 healthcare team and mental health counselors while palliative sedation is used.
Grief is a normal reaction to the loss of a loved one. People who feel unable to cope with their loss may be helped by grief counseling or grief therapy with trained professionals. See the PDQ summary on Grief, Bereavement, and Coping With Loss for more information.
The PDQ cancer information summaries are reviewed regularly and updated as new information becomes available. This section describes the latest changes made to this summary as of the date above.
Changes were made to this summary to match those made to the health professional version.
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