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. 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?
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.
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:
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.
When is the right time to use hospice care?
Many people believe that hospice care is only appropriate in the last days or weeks of life. Yet Medicare states that it can be used as much as 6 months before death is anticipated. And those who have lost loved ones say that they wish they had called in hospice care sooner.
Research has shown that patients and families who use hospice services report a higher quality of life than those who don’t. Hospice care offers many helpful services, including medical care, counseling, and respite care. People usually qualify for hospice when their doctor signs a statement saying that patients with their type and stage of disease, on average, aren’t likely to survive beyond 6 months. More information about hospice can be found below in the Related Resources section of this fact sheet.
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:
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.
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:
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.
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.
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.
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.
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:
The dying process:
What are the signs that the person has died?
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.