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Supportive care statement for Patients


Planning the Transition to End-of-Life Care in Advanced Cancer (PDQ)

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Overview
Quality Care at the End of Life
End-of-Life Care Decisions To Be Made
Talking with Your Doctor About End-of-Life Care
Supportive Care, Palliative Care, and Hospice
Advance Planning
The Transition to End-of-Life Care
About This PDQ Summary

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

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:

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

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

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.

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:

Supportive Care, Palliative Care, and Hospice

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

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:

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:

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:

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.

About This PDQ Summary

About PDQ

Physician Data Query (PDQ) is the National Cancer Institute's (NCI's) comprehensive cancer information database. The PDQ database contains summaries of the latest published information on cancer prevention, detection, genetics, treatment, supportive care, and complementary and alternative medicine. Most summaries come in two versions. The health professional versions have detailed information written in technical language. The patient versions are written in easy-to-understand, nontechnical language. Both versions have cancer information that is accurate and up to date and most versions are also available in Spanish.

PDQ is a service of the NCI. The NCI is part of the National Institutes of Health (NIH). NIH is the federal government’s center of biomedical research. The PDQ summaries are based on an independent review of the medical literature. They are not policy statements of the NCI or the NIH.

Purpose of This Summary

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.

Reviewers and Updates

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.

Clinical Trial Information

A clinical trial is a study to answer a scientific question, such as whether one treatment is better than another. Trials are based on past studies and what has been learned in the laboratory. Each trial answers certain scientific questions in order to find new and better ways to help cancer patients. During treatment clinical trials, information is collected about the effects of a new treatment and how well it works. If a clinical trial shows that a new treatment is better than one currently being used, the new treatment may become "standard." Patients may want to think about taking part in a clinical trial. Some clinical trials are open only to patients who have not started treatment.

Clinical trials are listed in PDQ and can be found online at NCI's website. Many cancer doctors who take part in clinical trials are also listed in PDQ. For more information, call the Cancer Information Service 1-800-4-CANCER (1-800-422-6237).

Permission to Use This Summary

PDQ is a registered trademark. The content of PDQ documents can be used freely as text. It cannot be identified as an NCI PDQ cancer information summary unless the whole summary is shown and it is updated regularly. However, a user would be allowed to write a sentence such as “NCI’s PDQ cancer information summary about breast cancer prevention states the risks in the following way: [include excerpt from the summary].”

The best way to cite this PDQ summary is:

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]

Images in this summary are used with permission of the author(s), artist, and/or publisher for use in the PDQ summaries only. If you want to use an image from a PDQ summary and you are not using the whole summary, you must get permission from the owner. It cannot be given by the National Cancer Institute. Information about using the images in this summary, along with many other images related to cancer can be found in Visuals Online. Visuals Online is a collection of more than 2,000 scientific images.

Disclaimer

The information in these summaries should not be used to make decisions about insurance reimbursement. More information on insurance coverage is available on Cancer.gov on the Managing Cancer Care page.

Contact Us

More information about contacting us or receiving help with the Cancer.gov website can be found on our Contact Us for Help page. Questions can also be submitted to Cancer.gov through the website’s E-mail Us.

Physicians version: CDR0000755559
Date first published: 2014-08-27 Date last modified: 2015-11-24

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Dr. G. Quade
This page was last modified on Tuesday, 21-Nov-2017 11:57:27 CET
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