Care Towards the End
End-of-Life Care for People Who Have Cancer
- End-of-life care provides physical, mental, and emotional comfort, as well as social support, to people who are living with and dying of advanced illness.
- 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.
- Record a person’s wishes for end-of-life care.
1. What does end-of-life care mean for people who have cancer?
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.
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.
It is important that the patient chooses 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 done so, it’s helpful for family caregivers to know what type of care their loved one would want to receive.
2. How do doctors know how long a person will continue to live?
Patients and their family members often want to know how long a person who has cancer will continue to live. It’s normal to want to be prepared for the future. But predicting how long someone will continue to live is a hard question to answer. A number of factors, including the type of cancer, its location, and whether the patient has other illnesses, can affect what will happen.
Although doctors may be able to estimate the amount of time someone will continue to live based on what they know about that person, they might be hesitant to do so. They may be concerned about over- or under-estimating the person’s remaining life span. They also might be fearful of giving false hope or destroying a person’s will to live.
3. When should someone call for professional help if they’re caring for a person who has cancer at home?
People caring for patients at home should ask them if they’re comfortable, if they feel any pain, and if they’re having any other physical problems.
There may be times when the caregiver needs assistance from the patient’s health care team. A caregiver can contact the patient’s doctor or nurse for help in any of the following situations:
- 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.
4. What are some ways to provide emotional support to a person who is living with and dying of cancer?
Everyone has different needs, but some worries are common to most dying patients. Two of these concerns are fear of abandonment and fear of being a burden. People who are dying also have concerns about loss of dignity and loss of control. Some ways caregivers can provide comfort to a person with these worries are listed below:
- 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.
- 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 if appropriate. Keep objects that are meaningful to the person close at hand.
5. What other issues should caregivers be aware of?
It’s just as important for caregivers to take care of their own health at this time. Family caregivers are affected by their loved one’s health more than they realize. Taking care of a sick person often causes physical and emotional fatigue, stress, depression, and anxiety. Because of this, it’s important for caregivers to take care of their own body, mind, and spirit. Helping themselves will give them more energy, help them cope with stress, and cause them to be better caregivers as a result.
It’s also helpful if caregivers ask for support from friends and family members. Such help is important to help lessen the many tasks involved in taking care of a loved one who is sick or dying.
6. What are some topics patients and family members can talk about?
For many people, it’s hard to know what to say to someone at the end of life. It’s normal to want to be upbeat and positive, rather than talk about death. And yet, it’s important to be realistic about how sick the person may be. Caregivers can encourage their loved one without giving false hope. Although it can be a time for grieving and accepting loss, the end of life can also be a time for looking for meaning and rethinking what’s important.
During this period, many people tend to look back and reflect on life, legacies created, and loved ones who will be left behind. Some questions to explore with a patient at the end of life are the following:
- 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.
7. How should caregivers talk to their children about advanced cancer?
Children deserve to be told the truth about a family member’s prognosis so they can be prepared if their loved one dies. It’s important to answer all of their questions gently and honestly so they don’t imagine things that are worse than reality. They need to be reassured that they will be taken care of no matter what happens.
Caregivers need to be prepared to answer tough questions. To do this, they should know what their own feelings and thoughts are about the situation. They need to be able to show children how to hope for the best while preparing for and accepting that their loved one may die.
8. How does cancer cause death?
Every patient is different, and the way cancer causes death varies. The process can depend on the type of cancer, where it is in the body, and how fast it’s growing.
For some people, the cancer can’t be controlled anymore and spreads to healthy tissues and organs. Cancer cells take up the needed space and nutrients that the healthy organs would use. As a result, the healthy organs can no longer function. For other people, complications from treatment can cause death.
During the final stages of cancer, problems may occur in several parts of the body.
- 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.
9. What are the signs that death is approaching, and what can the caregiver do to make the person comfortable during this time?
Certain signs and symptoms can help a caregiver anticipate when death is near. They are described below, along with suggestions for managing them. However, each person’s experience at the end of life is different. What may happen to one person may not happen for another. Also, the presence of one or more of these symptoms doesn’t necessarily mean that the patient is close to death. A member of the health care team can give family members and caregivers more information about what to expect.
Withdrawal from friends and family:
- 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. They may keep the patient covered with a light blanket.
10. 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.
11. What needs to be done after the person has died?
After the person has died, there is no need to hurry with arrangements. Family members and caregivers may wish to sit with the body, to talk, or to pray. When the family is ready, the following steps can be taken.
- 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.
- Contact the person’s doctor to certify the death.
- When the patient’s family members are ready, call other family members and friends.
- Provide or obtain emotional support for family members and friends to cope with their loss.
Dying with cancer doesn’t mean that you have less need for love, companionship, friendship and fun. For many people, partners, family and friends become even more important and are a vital source of support and reassurance at this difficult time.
Patients who are approaching the end of their life need high-quality treatment and care that support them to live as well as possible until they die, and to die with dignity. This guidance identifies a number of challenges in ensuring that patients receive such care, and provides a framework to support you in addressing the issues in a way that meets the needs of individual patients. Providing treatment and care towards the end of life will often involve decisions that are clinically complex and emotionally distressing.
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.
- 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.