Planning the Transition to End-of-Life Care in Advanced Cancer (PDQ®)–Patient Version
Overview
When you learn you have advanced cancer, you’re faced with many decisions about your end-of-life care. Talking about these decisions early can make it easier on you and your family later. The following are some questions you may want to think about:
Some patients choose to receive all possible treatments. Others choose to receive only some treatments or no treatment at all. Some choose to receive only care that will keep them comfortable. Having information about your options will help you make these choices. Together, you, your family, and your doctor can decide on a plan for your care during the advanced stages of cancer.
Quality Care at the End of Life
Key Points
- You decide what quality care at the end of life means for you.
- Make end-of-life care decisions early.
You decide what quality care at the end of life means for you.
Your care continues even after all treatments have stopped. End-of-life care is more than what happens moments before dying. Care is needed in the days, weeks, and sometimes even months before death. During this time, many patients feel it's important to:
- Have their pain and symptoms controlled.
- Avoid a long process of dying.
- Feel a sense of control over what is happening to them.
- Cause less emotional and financial burden on the family.
- Become closer with loved ones.
Your doctors and family need to know the kind of end-of-life care you want.
Make end-of-life care decisions early.
You may be able to think about your options more clearly if you talk about them before the decisions need to be made. It's a good idea to let your doctors, family, and caregivers know your wishes before there is an emergency.
End-of-Life Care Decisions To Be Made
Key Points
- Care decisions for the last stages of cancer can be about treatments and procedures, pain control, place of care, and spiritual issues.
- Chemotherapy
- Pain and symptom control
- Cardiopulmonary resuscitation (CPR)
- Ventilator use
- Religious and spiritual support
Care decisions for the last stages of cancer can be about treatments and procedures, pain control, place of care, and spiritual issues.
Chemotherapy
Some patients choose to begin new chemotherapy treatment in the end stages of cancer. Others wish to let the disease take its course when a cure is not expected. In the end stages of cancer, chemotherapy usually doesn't help you live longer and it may lower the quality of the time that remains. Each person and each cancer is different. Talking with your doctor about the effects of treatment and your quality of life can help you make a decision. You can ask if the treatment will make you comfortable or if it will help you live longer.
Pain and symptom control
Controlling pain and other symptoms can help you have a better quality of life in the end stages of cancer. Pain and symptom control can be part of your care in any place of care, such as the hospital, home, and hospice.
Cardiopulmonary resuscitation (CPR)
It's important to decide if you will want to have cardiopulmonary resuscitation (CPR). CPR is a procedure used to try to restart the heart and breathing when it stops. In advanced cancer, the heart, lungs, and other organs begin to fail and it's harder to restart them with CPR. Your doctor can help you understand how CPR works and talk with you about whether CPR is likely to work for you.
People who are near the end of life may choose not to have CPR done. Your decision about having CPR is personal. Your own spiritual or religious views about death and dying may help you decide. If you decide you don’t want CPR, you can ask your doctor to write a do-not-resuscitate (DNR) order. This tells other health care professionals not to perform CPR if your heart or breathing stops. You can remove the DNR order at any time.
Talk with your doctors and other caregivers about CPR as early as possible (for example, when being admitted to the hospital), in case you’re not able to make the decision later. If you do choose to have your doctor write a DNR, it’s important to tell all your family members and caregivers about it.
In the United States, if there is no DNR order, you will be given CPR to keep you alive.
Ventilator use
A ventilator is a machine used to help you breathe and keep you alive after normal breathing stops. It doesn't treat a disease or condition. It's used only for life support. You can tell doctors whether you would want to be put on a ventilator if your lungs stop working or if you cannot breathe on your own after CPR. If your goal of care is to live longer, you may choose to have a ventilator used. Or you may choose to have a ventilator for only a certain length of time. It's important to tell your family and health care providers what you want before you have trouble breathing. For more information, see the section on ventilator use in the PDQ summary on Last Days of Life.
Religious and spiritual support
Your religious or spiritual beliefs may help you with end-of-life decisions. Clergy and chaplains can give counseling. You can also talk with a member of your church, a social worker, or even other people who have cancer.
Talking with Your Doctor About End-of-Life Care
Key Points
- You may need to start the conversation.
- Prognosis, treatment goals, and making decisions are some of the end-of-life issues to discuss with your doctor.
- Early communication with your doctors can help you feel more prepared for end-of-life issues.
- There are ways to improve communication with your doctors.
You may need to start the conversation.
Some doctors don't ask patients about end-of-life issues. If you want to make choices about these issues, talk with your doctors so that your wishes can be carried out. Open communication can help you and your doctors make decisions together and create a plan of care that meets your goals and wishes. If your doctor is not comfortable talking about end-of-life plans, you can talk to other specialists for help. (See the PDQ summary on Communication in Cancer Care.)
Prognosis, treatment goals, and making decisions are some of the end-of-life issues to discuss with your doctor.
- Understand your prognosis
Having a good understanding of your prognosis is important when making decisions about your care and treatment during advanced cancer. You will probably want to know how long you have to live. That's a hard question for doctors to answer. It can be different for each person and depends on the type of cancer, where it has spread, and whether you have other illnesses. Treatments can work differently for each person. Your doctor can talk about the treatment options with you and your family and explain the effects they may have on your cancer and your quality of life. Knowing the benefits and risks of available treatments can help you decide on your goals of care for the last stages of the cancer.
- Decide on your care goals
Your care goals for advanced cancer depend in part on whether quality of life or length of life is more important to you. Your goals of care may change as your condition changes or if new treatments become available. Tell your doctor what your goals of care are, even if you aren't asked. It's important that you and your doctor are working toward the same goals.
- Take part in making decisions
Do you want to take part in making the decisions about your care? Or would you rather have your family and your doctors make those decisions? This is a personal choice and your family and doctors need to know what you want.
Early communication with your doctors can help you feel more prepared for end-of-life issues.
Many patients who start talking with their doctors early about end-of-life issues report feeling better prepared. Better communication with your doctors may make it easier to deal with concerns about being older, living alone, relieving symptoms, spiritual well-being, and how your family will cope in the future.
There are ways to improve communication with your doctors.
Tell your doctor how you and your family wish to receive information and the type of information you want. Also ask how you can get information at times when you can't meet face-to-face.
Remembering what your doctor said and even remembering what you want to ask can be hard to do. Some of the following may help communication and help you remember what was said:
- Have a family member go with you when you meet with your doctor.
- Make a list of the questions you want to ask the doctor during your visit.
- Get the information in writing.
- Record the discussion with tape recorders, smart phones, or on video.
- Ask if your doctor or clinic offers any of the following:
- A cancer consultation preparation package, which includes aids such as a question idea sheet, booklets on decision making and patient rights, and information about the clinic.
- A talk with a psychologist about advance planning and end-of-life issues.
- An end-of-life preference interview, which includes a list of questions that can help you explain your wishes about the end of life.
Supportive Care, Palliative Care, and Hospice
Key Points
- Even when treatments can no longer cure the cancer, medical care is still needed.
- Supportive care
- Palliative care
- Hospice care
Even when treatments can no longer cure the cancer, medical care is still needed.
Some of the end-of-life care options are supportive care, palliative care, and hospice.
Supportive care
Supportive care is given to prevent or treat, as early as possible, the symptoms of the cancer, side effects caused by treatments, and psychological, social, and spiritual problems related to the cancer or its treatment. During active treatment to cure the cancer, supportive care helps you stay healthy and comfortable enough to continue receiving the cancer treatments. In the last stages of cancer, when a cure is no longer the goal, supportive care is used for side effects that continue.
Palliative care
Palliative care is specialized medical care for people with serious or life-threatening illnesses. The focus of palliative care is relief from pain and other symptoms, both during active treatment and when treatment has been stopped. Palliative care is offered in some hospitals, outpatient centers, and in the home.
Palliative care helps to improve your quality of life by preventing and relieving suffering. When you're more comfortable, your family's quality of life may also be better. Palliative care includes treating physical symptoms such as pain, and helping you and your family with emotional, social, and spiritual concerns. When palliative treatment is given at the end of life, the focus is on relieving symptoms and distress caused by the process of dying and to make sure your goals of care are followed.
Hospice care
When treatment is no longer helping, you may choose hospice. 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 focuses on quality of life rather than length of life. The hospice team offers physical, emotional, and spiritual support for patients who are expected to live no longer than six months. 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 supportive and palliative care to control pain and other symptoms so you can be as alert and comfortable as possible. Services to help with the emotional, social, and spiritual needs of you and your family are also an important part of hospice care.
Hospice programs are designed to keep the patient at home with family and friends, but hospice care may also be given in hospice centers and in some hospitals and nursing homes. 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. The hospice program continues to give help, including grief counseling, to the family after their loved one dies. Ask your doctor for information if you wish to receive hospice care.
Advance Planning
Key Points
- Making end-of-life care decisions early can ease your mind and decrease stress on your family.
- Advance directives are documents that state what your wishes are for certain medical treatments when you can no longer communicate those wishes.
- All your caregivers need to have copies of your advance directives.
- You can change or cancel an advance directive at any time.
Making end-of-life care decisions early can ease your mind and decrease stress on your family.
There may come a time when you can't tell the health care team what you want. When that happens, would you prefer to have your doctor and family make decisions? Or would you rather make decisions early, so your wishes will be known and can be followed when the time comes? If not planned far ahead of time, the end-of-life decisions must be made by someone other than you.
Planning ahead for end-of-life care helps with the following:
- Makes sure your doctors and family know what your wishes are.
- Allows you to refuse the use of treatments.
- Decreases the emotional stress on your family, who would have to make decisions if you aren't able to.
- Reduces the cost of care, if you choose not to receive life-saving procedures.
- Eases your mind to have these decisions already made.
You can make your wishes known with an advance directive.
Advance directives are documents that state what your wishes are for certain medical treatments when you can no longer communicate those wishes.
Advance directive is the general term for different types of documents that state what your wishes are for certain medical treatments when you can no longer tell those wishes to your caregivers. In addition to decisions about relieving symptoms at the end of life, it is also helpful to decide if and when you want certain treatments to stop. Advance directives make sure your wishes about treatments and life-saving procedures to keep you alive are known ahead of time. Without knowing your wishes, doctors will do everything medically possible to keep you alive, such as cardiopulmonary resuscitation (CPR) and the use of a ventilator (breathing machine).
Each state has its own laws for advance directives. Make sure your advance directives follow the laws of the state where you live and are being treated. State-specific advance directives can be downloaded from the Caring Connections section of the National Hospice and Palliative Care Organization website.
The following are types of documents that communicate your wishes in advance:
- Living will: A legal document that states whether you want certain life-saving medical treatments to be used or not used under certain circumstances. Some of the treatments covered by a living will include CPR, use of a ventilator (breathing machine), and tube-feeding.
- Health care proxy (HCP): A document in which you choose a person (called a proxy) to make medical decisions if you become unable to do so. It's important that your proxy knows your values and wishes, so that he or she can make the decisions you would make if you were able. You do not have to state specific decisions about individual treatments in the document, just state that the proxy will make medical decisions for you. HCP is also known as durable power of attorney for health care (DPOAHC) or medical power of attorney (MPOA).
- Do-Not-Resuscitate (DNR) order: A document that tells medical staff in the hospital not to do cardiopulmonary resuscitation (CPR) if your heart or breathing stops. (See the Cardiopulmonary resuscitation (CPR) section, above, for more information.) A DNR order is a decision only about CPR. It does not affect other treatments that may be used to keep you alive, such as medicine or food.
- Out-of-hospital DNR order: A document that tells emergency medical workers outside of a hospital that you do not wish to have CPR or other types of resuscitation. Each state has its own rules for a legal out-of-hospital DNR order, but it is usually signed by the patient, a witness, and the doctor. It's best to have several copies so one can quickly be given to emergency medical workers when needed.
- Do-Not-Intubate (DNI) order: A document that tells medical staff in a hospital or nursing facility that you do not wish to have a breathing tube inserted and to be put on a ventilator (breathing machine).
- Physician Orders for Life-Sustaining Treatment (POLST): A form that states what kind of medical treatment you want toward the end of your life. It is signed by you and your doctor.
- Medical Orders for Life-Sustaining Treatment (MOLST): A form that states the care you would like to receive if you are not able to communicate. This care includes CPR, intubation (breathing tubes), and other life-saving procedures. Under current law, the information in a MOLST form must be followed both in the home and hospital by all medical staff, including emergency medical workers.
All your caregivers need to have copies of your advance directives.
Give copies of your advance directives to your doctors, caregivers, and family members. Advance directives need to move with you. If your doctors or your place of care changes, copies of your advance directives need to be given to your new caregivers. This will make sure that your wishes are known through all cancer stages and places of care.
You can change or cancel an advance directive at any time.
The Transition to End-of-Life Care
The word transition can mean a passage from one place to another. The transition or change from looking toward recovery to receiving end-of-life care is not an easy one and there are important decisions to be made. If you become too sick before you have made your wishes known, others will make care and treatment decisions for you, without knowing what you would have wanted. It may be less stressful for everyone if you, your family, and your health care providers have planned ahead for this time.
The goal of end-of-life care is to prevent suffering and relieve symptoms. The right time to transition to end-of-life care is when this supports your changing condition and changing goals of care.
There are certain times when you may think about stopping treatment and transitioning to comfort care. These include:
- Finding out that the cancer is not responding to treatment and that more treatment is not likely to help.
- Having poor quality of life due to the side effects or complications of treatment.
- Being unable to carry out daily activities when the disease progresses.
Together with your doctor, you and your family members can share an understanding about treatment choices and when transition to end-of-life care is the best choice. When you make the decisions and plans, doctors and family members can be sure they are doing what you want.
For more information about the end of life, see the PDQ summary on Last Days of Life.
To Learn More About Planning for End-of-Life Care
About This PDQ Summary
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This PDQ cancer information summary has current information about planning for end-of-life care in advanced cancer. 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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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 ("Updated") is the date of the most recent change.
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PDQ® Supportive and Palliative Care Editorial Board. PDQ Planning the Transition to End-of-Life Care in Advanced Cancer. Bethesda, MD: National Cancer Institute. Updated <MM/DD/YYYY>. Available at: https://www.cancer.gov/about-cancer/advanced-cancer/planning/end-of-life-pdq. Accessed <MM/DD/YYYY>. [PMID: 26389514]
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