Advanced Cancer and Palliative Care Treatment Guidelines for Patients – Version I/December 2003

With this report, patients have their first access to information on how cancer care decisions near the end of life are made at the nation's leading cancer centers. Originally developed for cancer specialists by the National Comprehensive Cancer Network (NCCN), these treatment guidelines have now been translated for the general public by the American Cancer Society (ACS). To obtain a printed copy of these guidelines, as well as more information, call the American Cancer Society at 1-800-ACS-2345 or the NCCN at 1-888-909-NCCN, or visit these organizations' Web sites at www.cancer.org (ACS) and www.nccn.org (NCCN).

Since 1995, doctors have looked to the NCCN for advice on treating cancer. The NCCN Clinical Practice Guidelines were developed by a diverse panel of experts from 20 of the nation's leading cancer centers.

For more than 85 years, the public has relied on the American Cancer Society for information about cancer. The Society's books, brochures and web pages provide comprehensive, current, and understandable information to hundreds of thousands of patients, their families, and friends. This collaboration between the NCCN and ACS provides an authoritative and understandable source of cancer treatment information for the general public. These patient guidelines will help you better understand how to make decisions about your cancer care that are important to you.

In this study you’ll find flow charts that doctors call “algorithms” or “decision trees.” Each one shows you step-by-step how you and your doctor can arrive at the choices you need to make about your treatment.

To make an informed decision you will need to understand some of the medical terms your doctor uses. You may feel you're on familiar ground already, or perhaps you need to refer to the various sections listed in the table of contents. We've also provided a Glossary. Words in blue italics are defined in the glossary. When you click on these terms, their definitions will appear in a small pop-up window.

What Is Palliative Care?

Palliative care is care that relieves suffering and improves the quality of a patient's life. It is care that treats symptoms caused by the cancer treatment or symptoms caused by the disease. Some health professionals call this supportive care.

Palliative care is given to patients at all stages of cancer. For example, the person who receives medicines to control their nausea and vomiting during chemotherapy is receiving supportive or palliative care.

At some point, a person's cancer may start growing and spread to vital organs. This is called advanced cancer. As the cancer progresses and choices for further cancer treatment become limited, the palliative care increases and becomes the major focus of care for the patient and family. Symptoms increase and more attention is needed to help control them. As an example, the person with advanced cancer receiving medicines to control his/her cancer pain near the end of life is receiving palliative care.

Although palliative care is given throughout all stages of the cancer to some degree, for purposes of this guideline, the NCCN has chosen to focus on palliative care given during the last year of life.

This is a difficult subject to think and talk about. Everyone with cancer hopes that their cancer will be cured, and when that is not likely to be possible, it becomes very difficult to think about one's life in terms of "last year." But when it is apparent that a person's cancer is growing, and when treatment choices become limited, the cancer care team can begin to make some predictions about end of life. Treatment of the cancer can continue; the goal may no longer be to cure the cancer, but to control symptoms caused by the cancer so patients can continue to do some of the activities they enjoy. With increasing symptoms, the focus of care begins to change to helping control symptoms and making the patient comfortable.

Common symptoms that are treated and controlled or relieved by palliative care can include:

• Pain
• Difficulty breathing
• Loss of appetite and weight loss
• Fatigue
• Weakness
• Sleep problems
• Depression and anxiety
• Confusion

Fatigue

Fatigue is the feeling of being tired physically, mentally, and emotionally. It means having less energy to do the things you normally do or want to do.

Cancer-related fatigue is defined as an unusual and persistent sense of tiredness that can occur with cancer or cancer treatment. It can become chronic in that it can persist over time and can interfere with usual activities. This fatigue is different from the fatigue of everyday life, which is usually temporary and relieved by rest. This fatigue is more severe and distressing. Rest does not always relieve it. For some people, this kind of fatigue can be more distressing than pain, nausea and vomiting, or depression. Cancer-related fatigue can:

• Vary in its unpleasantness, severity, and amount of time that it is present
• Be overwhelming and hinder your ability to feel well
• Make even being with your friends and family difficult
• Decrease your ability to continue normal activities, including going to work
• Make it difficult to follow your cancer treatment plan

Patients with cancer say fatigue is the most distressing symptom of their cancer and its treatment. It is one that drastically affects the quality of their life. However, they rarely describe their symptom as 'fatigue' unless their health care team suggests it.

To learn more about how to deal with cancer-related fatigue, please refer to our online guidelines "Cancer-Related Fatigue Treatment Guidelines for Patients" or call the American Cancer Society at 1-800-ACS-2345 and ask for a free copy of the booklet.

Depression and Anxiety

Some degree of depression and anxiety is common in people who are coping with cancer. But when a person is emotionally upset for a long time or is having trouble doing day-to-day activities, that person may have clinical depression or severe anxiety that requires medical attention. About 25% of people with cancer are clinically depressed. This can cause great distress and decreased ability to follow a treatment schedule.

Family and friends should be alert for symptoms of distress. If they notice symptoms of depression or anxiety, they should help this person seek the help of a health care professional. Anxiety and clinical depression can be treated many different ways, including medicines, psychotherapy, a combination of both, or other treatments. These treatments can help the person feel better and improve the quality of their life.

Cancer-Related Pain

About one-third of patients being treated for cancer have pain. More than two-thirds of patients with advanced cancer (cancer that has spread or recurred) have pain. For these patients, controlling pain and managing symptoms are important goals of treatment.

Pain affects a person's life. Patients who have chronic pain (pain ranging from mild to severe and present for a long time) may not be able to take part in their regular activities as much, may have sleeping and eating problems, and may be frustrated that family and friends do not always understand how they feel.

Cancer pain is a common problem, but many people are afraid to take pain medicines for fear of addiction or severe side effects. Addiction rarely occurs in people who have pain and side effects can be prevented or controlled by your doctor or cancer care team. Each person is unique and treatment is planned based on the person's specific pain.

To learn more about how to deal with cancer-related pain, please refer to our online guidelines "Cancer Pain Treatment Guidelines for Patients" or call the American Cancer Society at 1-800-ACS-2345 and ask for a free copy of the booklet.

Breathing Difficulties

Breathing difficulties occur when the body is not getting enough oxygen. People with cancer may experience shortness of breath or difficulty breathing due to a number of different problems including:

• Chronic lung diseases such as emphysema and other diseases not related to cancer
• Airway obstruction (blockage of a breathing tube)
• Pneumonia
• Pain
• Difficulty with movement or not being able to move
• Malnutrition (lack of adequate nutrients for the body)
• Obesity
• Stress or anxiety
• Surgery
• Anemia
• Side effects of chemotherapy or radiation therapy
• The cancer itself
• Fluid in the lungs

These problems either prevent the lungs from breathing in enough air, or prevent them from delivering enough oxygen to the cells of the body.

When treating breathing problems as life expectancy decreases to the last few weeks or days of life, the role of assisted ventilation (putting patients on a machine that breathes for them) decreases. These treatments are replaced with opioid pain medicines, anti-anxiety medicines to reduce cough and ease the distress caused by shortness of breath, and other medicines that help dry up lung secretions or reduce anxiety.

Weight Loss and Inability to Eat

Nutrition sustains life. Eating the right kinds of foods before, during, and after treatment can help patients feel better and stay stronger. When cancer becomes advanced, patients often have no appetite and may lose a lot of weight. These symptoms are typically caused by the cancer itself and are not within patients' control. They understand the importance of eating and may want to eat to help themselves, but they cannot force themselves to eat. In the final days of life the body cannot use the food or fluid and continuing it may increase patient discomfort. Here decisions must be made about the importance of nutrition in helping patients meet their goals.

Typically, care related to hydration and nutrition in the final weeks of life includes treatment of dry mouth and thirst, and helping the patient's family understand and cope with their feelings about stopping nutrition.

Confusion

Sometimes, a patient's thoughts are disturbed and they have trouble thinking and acting normally. For example, the patient may not know who or where they are or what day it is. Many different things can cause confusion:

• Liver disease
• Bowel obstruction (or blockage)
• Drugs that affect the central nervous system or brain
• Bladder blockage
• Medicine withdrawal

It is not uncommon for a person with advancing disease to have little emotion or to become restless, anxious, depressed, irritable, or angry. These are usually symptoms of delirium, which is an advanced state of confusion. Delirium is similar to confusion, but the patient may appear to not know where he is or may see things that are not really there. These symptoms should be reported to the doctor.

This guideline will help you and your family better understand care during the last year of life and help prepare you for making decisions about the type of care you wish to receive if this time should come. Think of the possibility - that this time might come for you - and think ahead about the decisions you, and not someone else, would want to make about your care.

The entire report is also available as a PDF file:

NCCN Palliative Care Guidelines.pdf 879 k

You will need Adobe Acrobat to read this file.  Click here to download a current version.

TREATMENT GOALS

The mutual goal of the National Comprehensive Cancer Network® (NCCN®) and the American Cancer Society (ACS) partnership is to provide patients and the general public with state-of-the-art cancer treatment information in understandable language. This information, based on the NCCN's Clinical Practice Guidelines, is intended to assist you in the dialogue with your physician. These guidelines do not replace the expertise and clinical judgment of your physician. Each patient's situation must be evaluated individually. It is important to discuss the guidelines and all information regarding treatment options with your physician. To ensure that you have the most up-to-date version of the guidelines, consult the web sites of the ACS (www.cancer.org) or NCCN (www.nccn.org). You may also call the NCCN at 1-888-909-NCCN or the ACS at 1-800-ACS-2345 for the most recent information.

NCCN Clinical Practice Guidelines were developed by a diverse panel of experts. The guidelines are a statement of consensus of its authors regarding the scientific evidence and their views of currently accepted approaches to treatment. The NCCN guidelines are updated as new significant data become available. The Patient Information version will be updated accordingly and will be available on-line through the NCCN and the American Cancer Society web sites. To ensure you have the most recent version, you may contact the American Cancer Society or the NCCN.

© 2004 by the National Comprehensive Cancer Network (NCCN) and the American Cancer Society (ACS). All rights reserved. The information herein may not be reproduced in any form for commercial purposes or downloaded and stored in any information-retrieval system without the express written permission of the NCCN and the ACS. Single copies of each page may be printed out for personal, noncommercial use only.