Last Days of Life (PDQ®)–Patient Version
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 people with cancer. It is important for families and healthcare providers to talk openly with the person about their end-of-life plans and know their wishes ahead of time. This will make it easier for family members to make major decisions for the person 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 person'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 they must make during this time.
For more information on end-of-life planning, including palliative and hospice care, see Planning the Transition to End-of-Life Care in Advanced Cancer.
Care in the Final Hours
- Knowing what to expect in the final days or hours helps comfort the family.
- People may not want to eat or drink in the final days or hours.
- People near death may not respond to others.
- A number of physical changes are common when a person is near death.
- Cultural or religious beliefs and customs may be important at the time of death.
Knowing what to expect in the final days or hours helps comfort the family.
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.
People may not want to eat or drink in the final days or hours.
In the final days to hours of life, people 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 person because it can cause discomfort or choking.
People near death may not respond to others.
People 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 people 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 person, even if they do not respond.
A number of physical changes are common when a person is near death.
Certain physical changes may occur in a person at the end of life:
- They may feel tired or weak.
- They may pass less urine and it may be dark in color.
- Their hands and feet may become blotchy, cold, or blue. Caregivers can use blankets to keep the person warm. Electric blankets or heating pads should not be used.
- Their heart rate may go up or down and become irregular.
- Blood pressure usually goes down.
- Breathing may become irregular, with very shallow breathing, short periods of not breathing, or deep, rapid breathing.
However, 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.
Cultural or religious beliefs and customs may be important at the time of death.
After a person dies, family members and caregivers may wish to stay with them awhile. There may be certain customs or rituals that are important to the person and family at this time. These might include rituals for coping with death, handling the person's body, making final arrangements for the body, and honoring the death. It’s important to let the healthcare team know what customs or rituals are important to the person and their family after the person’s death.
For more information, see Spirituality in Cancer Care.
Symptoms During the Final Months, Weeks, and Days of Life
- Delirium can have many causes at the end of life.
- Delirium may be controlled by finding and treating the cause.
- Hallucinations that are not related to delirium often occur at the end of life.
- Fatigue is one of the most common symptoms in the last days of life.
- Shortness of Breath
- Feeling short of breath is common and may get worse during the final days or weeks of life.
- The use of opioids and other methods can help the person breathe more easily.
- Pain medicines can be given in several ways.
- Pain during the final hours of life can usually be controlled.
- Cough at the end of life can be treated in several ways.
- Constipation may occur in the last days of life.
- Trouble Swallowing
- People may have trouble swallowing food and fluids at the end of life.
- Death Rattle
- Rattle occurs when saliva or other fluids collect in the throat and upper airways.
- Non-drug treatments for rattle include changing the person's position and giving less fluid.
- Death rattle is a sign that death may soon occur.
- Myoclonic Jerking
- Myoclonic jerks may be caused by taking very high doses of opioids for a long time.
- Fever may be caused by infection, medicines, or the cancer itself.
- Sudden hemorrhage (heavy bleeding) may occur in people who have certain cancers or disorders.
- Making the person comfortable is the main goal of care during hemorrhage at the end of life.
Common symptoms at the end of life include the following:
Delirium can have many causes at the end of life.
Delirium is common during the final days of life. Most people have a lower level of consciousness. They may be withdrawn, be less alert, and have less energy. Some people may be agitated or restless, and have hallucinations (see or hear things not really there). People near death should be protected from having accidents or hurting themselves when they are confused or agitated.
Delirium can be caused by the direct effects of cancer, such as a growing tumor in the brain. Other causes include the following:
- A higher- or lower-than-normal amount of certain chemicals in the blood that keep the heart, kidneys, nerves, and muscles working the way they should.
- Side effects of drugs or drug interactions (changes in the way a drug acts in the body when taken with certain other drugs, herbal medicine, or foods).
- Stopping the use of certain drugs or alcohol.
- Dehydration (the loss of needed water from the body).
Delirium may be controlled by finding and treating the cause.
Depending on the cause of the delirium, doctors may do the following:
For some people in the last hours of life, the decision may be to treat only the symptoms of delirium and make the person 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 people near death 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 is one of the most common symptoms in the last days of life.
Fatigue (feeling very tired) is one of the most common symptoms in the last days of life. A person'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. For more information, see Fatigue.
Shortness of Breath
Feeling short of breath is common and may get worse during the final days or weeks of life.
Shortness of breath or not being able to catch your breath is often caused by advanced cancer. Other causes include the following:
The use of opioids and other methods can help the person breathe more easily.
Other ways to help people who feel short of breath include the following:
Pain medicines can be given in several ways.
In the last days of life, a person may not be able to swallow pain medicine. When medicines cannot be taken by mouth, the pain medicine may be given by injection or infusion. 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 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. For more information about opioids, see Cancer Pain.
Cough at the end of life can be treated in several ways.
Cough at the end of life may add to a person'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 person as comfortable as possible:
For more information, see Cardiopulmonary Syndromes.
Constipation may occur in the last days of life.
People with cancer may have constipation in the last days of life. People who have trouble swallowing may not be able to take laxatives by mouth to treat the constipation. If needed, laxatives may be given rectally to make them comfortable.
People may have trouble swallowing food and fluids at the end of life.
People 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 person 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 collect in the throat and upper airways.
Rattle occurs when saliva or other fluids build up in the throat and airways in a person 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, aspiration, 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.
Non-drug treatments for rattle include changing the person's position and giving less fluid.
Raising the head of the bed, propping the person up with pillows, or turning them to either side often relieves 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.
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 person and is not the same as shortness of breath.
Myoclonic jerks may be caused by taking very high doses of opioids for a long time.
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. People respond to opioids in different ways, and certain opioids may be more likely than others to cause myoclonic jerking in some people.
When a person 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 person down, relieve anxiety, and help them sleep.
Fever may be caused by infection, medicines, or the cancer itself.
Treatment of fever in the last days of life depends on whether it causes the person distress or discomfort. Fever may be caused by infection, medicines, or the cancer itself. Although infections may be treated with antibiotics, people near the end of life may choose not to treat the cause of the fever.
Sudden hemorrhage (heavy bleeding) may occur in people who have certain cancers or disorders.
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. People with the following conditions have an increased risk of hemorrhage:
The person and family should talk with the doctor about any concerns they have about the chance of hemorrhage.
Making the person comfortable is the main goal of care during hemorrhage at the end of life.
It is hard to know when hemorrhage might occur. When sudden bleeding occurs at the end of life, people usually become unconscious and die soon afterwards. Resuscitation (restarting the heart) usually will not work.
The main goal of care is to make the person comfortable and to support family members. If hemorrhage occurs, it can be very upsetting, and it may be helpful for the family to ask questions about it and talk about their feelings with one another and their care team.
Care Decisions in the Final Weeks, Days, and Hours of Life
- Decisions about Chemotherapy
- Decisions about Targeted Therapy
- Decisions about Immunotherapy
- Decisions about Hospice
- Decisions about Place of Death
Decisions about Chemotherapy
Decisions about whether to continue or stop chemotherapy are made by the patient and doctor together. About one-third of people 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:
- serious side effects
- spending more days in the hospital
- spending the last days of life in an intensive care unit.
However, some people with cancer choose to continue chemotherapy because they feel it helps them to live in the present and focus on active treatment. Other people choose palliative or comfort care to treat pain and other symptoms. These decisions are based on the person's goals of care and the likely risks and benefits of treatment.
Decisions about Targeted Therapy
Treatment with targeted therapy at the end of life can result in the following:
- spending the last days of life in a hospital
- poor awareness of prognosis
- less time to prepare for the end of life
Decisions about Immunotherapy
Decisions about whether to continue or stop immunotherapy are made by the patient and doctor together. Many people taking immunotherapy are older or are no longer helped by chemotherapy, but these drugs may still have unwanted side effects.
Treatment with immunotherapy at the end of life can result in the following:
Decisions about Hospice
Hospice care is an important end-of-life option for people with advanced cancer. People may feel that beginning hospice care means they have given up. Some people fear losing the relationship with their oncologist. However, many patients and caregivers feel they receive important benefits from hospice care.
People who receive hospice care seem to have the following:
- better mental outlook
- better relief of symptoms
- better communication
- less stressful death (without causing death to happen sooner)
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 the person is not expected to live more than 6 months and is not being treated to be cured. Other policies may be different, depending on the hospice and the state.
Decisions about Place of Death
Many people with advanced cancer wish to die at home. People 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 people who die in a hospital or intensive care unit. Grieving caregivers have less trouble adjusting to their loss and feel they have honored the person's wishes when their loved one dies at home.
People who get hospice care are more likely to be able to die at home. Hospice care can help control the person's symptoms and give the caregiver the help they need.
However, not all people choose to die at home. It is important for the person, caregivers, and doctors to discuss where the person wants to die and the best way to fulfill the person's decision.
For children with advanced cancer, families and doctors should discuss wishes for the place of death early in the course of the disease. Children who die in the hospital may have more intense treatments and their parents may have more complicated grief than those of children who die at home.
Decisions about Life-Sustaining Treatments in the Last Days of Life
- In the last days of life, patients and family members will have to make decisions about treatments to keep the person alive.
- Choices about care and treatment at the end of life should be made while the person is able to make them.
- Care that supports a person's spiritual health may improve quality of life.
- The goals of giving fluids at the end of life should be discussed by patient, family, and doctors.
- Nutrition Support
- The goals of nutrition support for patients in the last days of life are different from the goals during cancer treatment.
- Making plans for nutrition support in the last days is helpful.
- Two types of nutrition support are commonly used.
- The benefits of using antibiotics in the last days of life are unclear.
- The decision to use blood transfusions in advanced cancer depends on goals of care and other factors.
- People should decide whether or not they want cardiopulmonary resuscitation (CPR).
In the last days of life, patients and family members will have to make decisions about treatments to keep the person alive.
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.
People near death may be guided by their oncologist, but they have the right to make their own choices about life-sustaining treatments. The following are some of the questions to discuss:
- What are the person’s goals of care?
- How would the possible benefits of life-sustaining treatments help reach the person's goals of care, and how likely is the desired outcome?
- How would the possible harms of life-sustaining treatments affect the person's goals of care? Is the possible benefit worth the possible harm?
- Besides possible benefits and harms of life-sustaining treatments, what else can affect the decision?
- Are there other resources, such as palliative care, a chaplain, or a medical ethicist, that could help the person or family make decisions about life-sustaining treatments?
Choices about care and treatment at the end of life should be made while the person is able to make them.
A person 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 people with cancer 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 people live just as long as those who choose to have more procedures, and have a better quality of life in their last days.
For more information, see Planning the Transition to End-of-Life Care in Advanced Cancer.
Care that supports a person's spiritual health may improve quality of life.
A spiritual assessment is a method or tool used by doctors to understand the role that religious and spiritual beliefs have in the person's life. This may help the doctor understand how these beliefs affect the way the person copes with cancer and makes decisions about cancer treatment.
Serious illnesses like cancer may cause people or family caregivers to have doubts about their beliefs or religious values and cause spiritual distress. Some studies show that people with cancer may feel anger at God or may have a loss of faith after being diagnosed. Other people 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 person's spiritual health. They may encourage the person to meet with their spiritual or religious leaders or join a spiritual support group. This may improve a person's quality of life and ability to cope. When people 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.
For more information, see Spirituality in Cancer Care.
The goals of giving fluids at the end of life should be discussed by patient, family, and doctors.
Decisions about giving fluids should be based on the person's goals of care. Giving fluids has not been shown to help patients live longer or improve their quality of life. However, the harms are minor and the family may feel there are benefits if the person is less fatigued and more alert.
The family may also be able to give the person sips of water or ice chips or swab the mouth and lips to keep them moist.
The goals of nutrition support for patients in the last days of life are different from the goals during cancer treatment.
Nutrition support can improve health and boost healing during cancer treatment. The goals of nutrition therapy for people during the last days of life are different from the goals for people in active cancer treatment and recovery. In the final days of life, people 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 them.
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 person more discomfort than help, then nutrition support near the end of life may be stopped. The needs and best interests of each person guide the decision to give nutrition support. When decisions and plans about nutrition support are made by the person near death, doctors and family members can be sure they are doing what the person wants.
Two types of nutrition support are commonly used.
If the person cannot swallow, two types of nutrition support are commonly used:
Each type of nutrition support has benefits and risks. For more information, see Nutrition in Cancer Care.
The benefits of using antibiotics in the last days of life are unclear.
The use of antibiotics and other treatments for infection is common in people 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 person comfortable in the last days of life rather than give treatments that may not help them live longer.
The decision to use blood transfusions in advanced cancer depends on goals of care and other factors.
Many people with advanced cancer have anemia. People 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:
- goals of care
- how long the person is expected to live
- the benefits and risks of the transfusion
The decision can be hard to make because people usually need to receive transfusions in a medical setting rather than at home.
Many people with cancer 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.
People should decide whether or not they want cardiopulmonary resuscitation (CPR).
An important decision for a person near death to make is whether to have cardiopulmonary resuscitation (CPR) (trying to restart the heart and breathing when it stops). It is best if people 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 person wishes, he or she can ask the doctor to write a DNR order. The person can ask that the DNR order be changed or removed at any time.
Last Days in the Hospital or Intensive Care Unit
- Choices about whether to use intensive care should be discussed.
- Ventilator use may keep a person alive after normal breathing stops.
- Before a ventilator is turned off, family members will be given information about what to expect.
Choices about whether to use intensive care should be discussed.
Near the end of life, people 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 person live longer but harm their 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.
Ventilator use may keep a person alive after normal breathing stops.
A ventilator is a machine that helps people breathe. Sometimes, using a ventilator will not improve the person's condition but will keep them alive longer. If the goal of care is to help the person live longer, a ventilator may be used, according to the person's wishes. If ventilator support stops helping or is no longer what the person wants, the person, their family, and the healthcare team may decide to turn the ventilator off.
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 person may respond when the ventilator is removed and about pain relief or sedation to keep the person 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 support to the family.
Suffering and Palliative Sedation at the End of Life
- The emotions of patients and caregivers are closely connected.
- Palliative sedation lowers the level of consciousness and relieves extreme pain and suffering.
The emotions of patients and caregivers are closely connected.
Patients and caregivers share the distress of cancer, with the caregiver's distress sometimes being greater than the patient's distress. Since caregiver suffering can affect the person's well-being and the caregiver's adjustment to loss, early and constant support of the caregiver is very important.
Palliative sedation lowers the level of consciousness and relieves extreme pain and suffering.
The decision whether to sedate a person at the end of life is a hard one. Sedation may be considered for a person's comfort or for a physical condition such as uncontrolled pain. Palliative sedation may be given on and off, or until death. A person's thoughts and feelings about end-of-life sedation may depend greatly on his or her own culture and beliefs. Some people who become anxious facing the end of life may want to be sedated. Some people and their families may wish to have a level of sedation that allows them to communicate with each other. Other people 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 person to tell family members and healthcare providers of their wishes about sedation at the end of life. When a person makes their wishes about sedation known ahead of time, doctors and family members can be sure they are doing what the person would want. Families may need support from the healthcare team and mental health counselors while palliative sedation is used.
Grief and Loss
About This PDQ Summary
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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.
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