advanced cancer and palliative...

Advanced Cancer andPalliative CareTreatment Guidelines for Patients

Version II/ January 2008

The mutual goal of the National Comprehensive Cancer Network® (NCCN®) andthe American Cancer Society (ACS) partnership is to provide patients and thegeneral public with state-of-the-art cancer treatment information in an easy-to-understand language. This information, based on the NCCN’s Clinical PracticeGuidelines, is intended to help you when you talk with your doctor. These guide-lines do not replace the expertise and clinical judgment of your doctor.

AdvancedCancer andPalliative CareTreatment Guidelines for PatientsVersion II/ January 2008

NCCN Clinical Practice Guidelines are developed by a diverse panel of experts.The guidelines are a statement of consensus of its authors regarding the scientificevidence and their views of currently accepted approaches to treatment. TheNCCN guidelines are updated as new information becomes available. The PatientInformation version is updated accordingly and is available on-line through theAmerican Cancer Society and NCCN web sites. To ensure you have the mostrecent version, contact the American Cancer Society at 1-800-ACS-2345 or theNCCN at 1-888-909-NCCN.

©2008 by the American Cancer Society (ACS) and the National ComprehensiveCancer Network (NCCN). All rights reserved. The information herein may not bereprinted in any form for commercial purposes without the expressed writtenpermission of the ACS. Single copies of each page may be reproduced for personaland non-commercial uses by the reader.

Contents

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .5What is palliative care? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .5Understanding your cancer treatment goals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .9Are clinical trials an option for you? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .9Complementary and alternative treatments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .11Hospice care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .11Cost of care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .12Advanced directives (advance care planning) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .12Support from others . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .14Facing death . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .16Caregivers section . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .18Grieving for the loss of a loved one . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .21

Treatment Guidelines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .23Decision Trees

Screening for and assessing palliative care needs . . . . . . . . . . . . . . . . . . . . . . . .24Palliative care assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .26Complex care assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .32Palliative care: Cancer treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .34Palliative care: Your personal goals and expectations . . . . . . . . . . . . . . . . . . . . .39Palliative care: Managing symptoms – pain . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .42Palliative care: Managing symptoms – difficulty breathing . . . . . . . . . . . . . . .46Palliative care: Loss of appetite and weight loss . . . . . . . . . . . . . . . . . . . . . . . . . .50Palliative care: Nausea and vomiting . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .54Persistent nausea and vomiting . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .56Palliative care: Constipation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .58Palliative care: Bowel blockage (obstruction) . . . . . . . . . . . . . . . . . . . . . . . . . . . . .60Palliative care: Confusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .64Palliative care: Advance directives (advance care planning) . . . . . . . . . . . . . .68Palliative care: Social support . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .72Palliative care: Complex care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .78Palliative care: Specialized care during the final days to hours . . . . . . . . . . . .80Palliative care: Care for the family and caregivers after death . . . . . . . . . . . . .82

City of Hope

Dana-Farber/Brigham and Women’s Cancer Center Massachusetts General Hospital Cancer Center

Duke Comprehensive Cancer Center

Fox Chase Cancer Center

Huntsman Cancer Institute at the University of Utah

Fred Hutchinson Cancer Research Center/Seattle Cancer Care Alliance

Arthur G. James Cancer Hospital and Richard J. Solove Research Institute at The Ohio State University

The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins

Robert H. Lurie Comprehensive Cancer Center of Northwestern University

Memorial Sloan-Kettering Cancer Center

H. Lee Moffitt Cancer Center & Research Institute

Roswell Park Cancer Institute

Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine

St. Jude Children’s Research Hospital/University of Tennessee Cancer Institute

Stanford Comprehensive Cancer Center

University of Alabama at Birmingham Comprehensive Cancer Center

UCSF Helen Diller Family Comprehensive Cancer Center

University of Michigan Comprehensive Cancer Center

UNMC/Eppley Cancer Center at The Nebraska Medical Center

The University of Texas M.D. Anderson Cancer Center

Vanderbilt-Ingram Cancer Center

Member Institutions

Introduction

With this booklet, patients have access toinformation on how cancer care decisionsnear the end of life are made at the nation’sleading cancer centers. Originally developedfor cancer specialists by the NationalComprehensive Cancer Network (NCCN),these treatment guidelines have now beentranslated for the general public by theAmerican Cancer Society (ACS). To get aprinted copy of these guidelines, as well asmore information, call the American CancerSociety at 1-800-ACS-2345 or the NCCN at 1-888-909-NCCN, or visit these organizations’Web sites at www.cancer.org (ACS) andwww.nccn.org (NCCN).

Since 1995, doctors have looked to theNCCN for advice on treating cancer. The NCCNClinical Practice Guidelines were developedby a diverse panel of experts from 21 of thenation’s leading cancer centers.

For more than 90 years, the public hasrelied on the American Cancer Society forinformation about cancer. The Society’sbooks, brochures and Web pages providecomprehensive, current, and understandableinformation to hundreds of thousands ofpatients, their families, and friends. This col-laboration between the NCCN and ACS pro-vides an authoritative and understandablesource of cancer treatment information forthe general public. These patient guidelineswill help you better understand how to makeimportant decisions about your care.

In this booklet you’ll find flow charts thatdoctors call “algorithms” or “decision trees.”Each one shows you step-by-step how you

and your doctor can arrive at the choices youneed to make about your treatment.

You may also find helpful informationabout finances, support, talking with others,and more in the American Cancer Society(ACS) document or the Web page, “Nearingthe End of Life.” These are available on theACS Web site at www.cancer.org, or by calling1-800-ACS-2345.

What is palliative care?

Palliative care is care that prevents andrelieves pain and suffering and promotescomfort and improved quality of life forpatients and their families. Some health pro-fessionals call this supportive care.

Palliative care is given to patients at allstages of cancer. For example, the person whoreceives medicines to control nausea andvomiting during chemotherapy is gettingsupportive or palliative care.

At some point, cancer may start growingand spread to vital organs. This is calledadvanced cancer. As the cancer progressesand choices for further cancer treatmentbecome limited, palliative care increases andbecomes the major focus of care for thepatient and family. Symptoms increase andmore attention is needed to help control them.As an example, the person with advancedcancer who gets medicines to control his/hercancer pain near the end of life is receivingpalliative care.

Although palliative care is given through-out all stages of cancer to some degree, and isa very important part of comfort and quality

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of life, in this guideline, the NCCN’s focus ison palliative care during the last year of life.

It is hard to think and talk about this sub-ject. Everyone with cancer hopes that theircancer will be cured, and when that turns outnot to be possible, it can be very difficult tothink about your life while looking at whatmay be your “last year.” When it becomesapparent that a person’s cancer is growing,and treatment choices are limited, the cancercare team may begin to make some predictionsabout end of life. While the cancer treatmentcan continue; the goal may no longer be tocure the cancer, but to control symptomscaused by the cancer so patients can still dosome of the activities they enjoy. When symp-toms increase, the focus of care begins tochange to helping control symptoms andmaking the patient comfortable.

This guideline will help you and yourfamily better understand care during the lastyear of life and help prepare you for makingdecisions about the type of care you wish toget at this time. You have the chance to thinkahead about the decisions you, and not some-one else, would want to make about your care.

Common symptoms that are treated andcontrolled or relieved by palliative care caninclude:

• cancer-related pain • difficulty breathing • loss of appetite and weight loss • fatigue and weakness• depression and anxiety • confusion • nausea and vomiting• constipation• bowel blockage (obstruction)

Cancer-related painAbout one-third of patients being treated forcancer have pain. More than two-thirds ofpatients with advanced cancer (cancer thathas come back or spread) have pain. Forthese people, controlling pain and managingsymptoms are important goals of treatment.

Pain affects a person’s life. Those who havechronic pain (pain that can range from mildto severe and lasts for a long time) may not beable to take part in their regular activities asmuch. They may have sleeping and eatingproblems and may feel frustrated that familyand friends do not always understand howtheir pain affects them.

Cancer pain is a common problem, butmany people are afraid to take pain medicinesbecause they are afraid of the side effects orbecoming addicted. People who have painrarely become addicted, and your doctor orcancer care team can usually prevent or controlside effects.

To learn more about coping with cancer-related pain, please call the American CancerSociety at 1-800-ACS-2345 and ask for a copyof the booklet, “Cancer Pain TreatmentGuidelines for Patients.”

Breathing difficultiesA person may notice trouble breathing whenthe body is not getting enough oxygen.People with cancer may be short of breath orhave difficulty breathing because of a num-ber of different problems including:

• chronic lung diseases such as emphysema and other diseases notrelated to cancer

• airway obstruction (blockage of abreathing tube)

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• pneumonia • pain • trouble moving, sometimes not being

able to move at all • 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 lungsfrom breathing in enough air, or keep themfrom getting enough oxygen for the cells ofthe body.

When a person has breathing problems inthe last few weeks or days of life, he or she isless likely to be helped by a machine thatbreathes for them (called a ventilator). Instead,the person is more likely to be treated withopioid pain medicines, anti-anxiety medicinesto reduce cough and ease the distress causedby shortness of breath, and other medicinesto help dry up mucus in the lung (secretions).

Loss of appetite and weight lossNutrition sustains life. Eating the right kindsof foods before, during, and after treatmentcan help patients feel better and stay stronger.This may change when cancer becomesadvanced. Patients often have no appetite andmay lose a lot of weight. This is often caused bythe cancer itself and is not within the patient’scontrol. They understand the importance of

eating and may want to eat to help themselves,but they cannot force themselves to eat. Inthe final days of life the body cannot use thefood or fluid. Continued feeding or extra fluidsmay make the patient more uncomfortable.Here decisions must be made about theimportance of nutrition in helping patientsmeet their goals.

Typically, care related to hydration andnutrition in the final weeks of life includestreatment of dry mouth and thirst, Familymembers often feel as if they have failed whenthey are unable to tempt the patient to eat ordrink. It is important that the family andcaregivers understand and accept that theycannot control this. They may also need waysto cope with their feelings about letting thepatient stop eating.

FatigueFatigue is the feeling of being tired physically,mentally, and emotionally. It means havingless energy to do the things you normally door want to do.

Cancer-related fatigue is defined as anunusual and ongoing sense of being tired thatcan happen with cancer or cancer treatment.It can become chronic, meaning that it canlast over time and can interfere with usualactivities. This fatigue is different from thefatigue of everyday life, which is usuallyshort-term and relieved by rest. This fatigueis more severe and distressing. Rest does notalways relieve it. For some people, this kind offatigue can be more distressing than pain,nausea and vomiting, or depression. Cancer-related fatigue can:

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• be unpredictable from one day to thenext in how unpleasant and severe itis, and how long it lasts

• be overwhelming and keep you fromfeeling well

• make being with your friends and family difficult

• decrease your ability to continue normalactivities, including going to work

• make it difficult to follow your cancertreatment plan

Patients with cancer say fatigue is the mostdistressing side effect of their cancer and itstreatment. It is one that drastically affects thequality of their life. However, they rarelydescribe their symptom as ‘fatigue’ unless theirhealth care team suggests it.

To learn more about how to deal withcancer-related fatigue, please call theAmerican Cancer Society at 1-800-ACS-2345and ask for a copy of “Cancer-Related FatigueTreatment Guidelines for Patients.”

Depression and anxietySome degree of depression and anxiety iscommon in people who are coping withcancer. But when a person is emotionallyupset for a long time or is having troubledoing day-to-day activities, that person mayhave clinical depression or severe anxiety thatrequires medical attention. About 1 in 4people with cancer are clinically depressed.This can cause them great distress and limittheir ability to follow a treatment schedule.

Family and friends should watch forsymptoms of distress. If they notice signs ofdepression or anxiety, they should help theperson with cancer get help from a health care

professional. Anxiety and clinical depressioncan be treated many different ways, includingmedicines, psychotherapy, a combination ofboth, or other treatments. These treatmentscan help the person feel better and improvetheir quality of life.

ConfusionSometimes, a patient’s thoughts are disturbedand they have trouble thinking and actingnormally. For example, the patient may notknow who or where they are or what day it is.Many different things can cause confusion:

• liver disease • bowel blockage (obstruction) • bladder blockage • medicines that affect the central

nervous system or brain • medicine withdrawal

It is not uncommon for a person withadvancing disease to have little emotion or tobecome restless, anxious, depressed, irritable,or angry. These are often signs of delirium,which is an advanced state of confusion. Oneminute the person may appear sleepy and notrespond to questions, but be awake the next.Or they may be loud and agitated but unableto say why. Delirium often shows up as confu-sion, in which the patient may appear to notknow where he is. He or she may see and hearthings that are not really there, and say thingsthat don’t make sense to others. These symp-toms should be reported to the doctor, sincethis kind of confusion can often be treated.

Nausea and vomitingNausea and vomiting are common side effectsof cancer treatments, such as chemotherapy

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and radiation therapy. Sometimes nauseaand vomiting are caused by the cancer itself.Treatment focuses on finding and treatingthe cause of the symptoms. In addition, thereare a number of drugs to treat nausea andvomiting that are very effective.

ConstipationA common side effect of strong pain medicines(opioids, such as morphine) is constipation.Because of this, ways to prevent constipationmust be considered whenever a patient startstaking these medicines. Prevention includesdrinking enough fluids, getting plenty offiber, and taking laxatives before the problemstarts. A number of drugs and laxatives canbe used to treat constipation.

Bowel blockageA blocked intestine (bowel obstruction) mayhave other causes besides cancer, such asscarring, hernia, or the side effects of radia-tion. Some of these causes can be treated withsurgery. However, surgery may not be thebest choice depending on the patient’s lifeexpectancy and treatment goals. For example,surgery is not usually appropriate if thepatient’s life expectancy can be measured inweeks or days. There are other less invasiveways to treat the symptoms of a blocked bowel.For example, a tube can be placed throughthe skin into the stomach to drain off fluidsthat may worsen nausea and vomiting. Asmall tube called a stent can be placedthrough an area of blocked intestine to keepit open. All of these treatment options mustbe carefully discussed with the doctor tochoose the one that best meets the patient’sneeds and expectations.

Understanding your cancertreatment goals

At any stage of cancer, the goal of any cancertreatment should be clear to both the patientand family. The goal may be to cure thecancer, extend life, or help with symptoms.Sometimes this can be confusing becausesome treatments used to cure cancer are alsoused to relieve symptoms. For example, radi-ation therapy can be used to cure cancer, butit can also be used to control bone pain. If youare not sure why something is being done,ask your doctor or cancer care team about it.

Some people believe that if their cancercannot be cured, nothing more can be done.So they stop all treatment. Some doctors thinkthis way as well. But something can almostalways be done. Radiation, chemotherapy,surgery, and other treatments can help con-trol symptoms and extend life. And relievingsymptoms like pain, upset stomach, vomiting,and difficulty breathing can help the patientfeel better.

Are clinical trials an optionfor you?

All drugs used to treat cancer or otherdiseases must undergo clinical trials in orderto determine their safety and effectivenessbefore the Food and Drug Administration(FDA) can approve them for use. Treatmentsused in clinical trials are often found to havereal benefits. Researchers conduct studies ofnew treatments to answer the followingquestions:

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• Is the treatment helpful?• How does this new type of treatment

work?• Does it work better than other

treatments already available? • What side effects does the treatment

cause? • Do the benefits outweigh the risks,

including side effects? • Which patients will the treatment

most likely help?

During cancer treatment, the doctor maysuggest taking part in a clinical trial.Scientists conduct clinical trials only whenthey believe that the treatment being studiedmay be better than other treatments.

All patients in a clinical trial are closelywatched by a team of experts to monitortheir progress very carefully. The study isdone to find out if the new treatment willwork better than the standard treatment andif the side effects are worse or less. The newtreatment may have some side effects, whichthe doctor will discuss with the patientbefore the clinical trial is started.

Deciding to enter a clinical trialTaking part in any clinical trial is completelyvoluntary. Doctors and nurses explain thestudy in detail and provide a consent form toread and sign. This form states that thepatient understands the risks and wants toparticipate. Even after signing the form andthe trial begins, the patient may leave thestudy at any time, for any reason.

Taking part in the study will not keepanyone from getting other medical care theymay need. Patients should always check with

their health insurance company to find outwhether it will cover the costs of taking partin a clinical trial.

Participating in a clinical trial evaluatingnew, improved methods for treating cancermay help the patient directly, and it may helpother people with cancer in the future. Forthese reasons, members of the NationalComprehensive Cancer Network and theAmerican Cancer Society encourage partici-pation in clinical trials.

How can I find out more aboutclinical trials that might be rightfor me?The American Cancer Society offers a clinicaltrials matching service that will help you finda clinical trials that is right for you. You canreach this service at 1-800-303-5691 or our Website http://clinicaltrials.cancer.org. Based onthe information you give about your cancertype, stage, and previous treatments, thisservice compiles a list of clinical trials thatmatch your medical needs. The service willalso ask where you live and whether you arewilling to travel so that it can look for a treat-ment center you can get to.

You can also get a list of current clinicaltrials by calling the National Cancer Institute’sCancer Information Service toll free at 1-800-4-CANCER (1-800-422-6237) or by visiting theNCI clinical trials Web site at www.cancer.gov/clinical_trials/.

More information about clinical trials isavailable through the American CancerSociety’s toll-free number at 1-800-ACS-2345or on our Web site at www.cancer.org.

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Complementary andalternative treatments

When you have cancer you are likely to hearabout ways to treat your cancer or relievesymptoms that are different from mainstream(standard) medical treatment. Especially aspatients near the end of life they may begin tothink about alternative therapies. This is alsoa time when well-meaning family and friendsmay suggest treatments that they have heardor read about. These treatments can includevitamins, herbs, and special diets, oracupuncture and massage, and many others.

The American Cancer Society definescomplementary treatment methods as thosethat are used along with your regular medicalcare. Some methods that can be used in acomplementary way are meditation toreduce stress, acupuncture to relieve pain, orpeppermint tea to relieve nausea. There aremany others. Some of these methods areknown to help and may add to your comfortand well being, while others have not beentested. Some have been proven not to behelpful. A few have even been found harmful.

Alternative treatments are defined asthose that are used instead of standardmedical care. These treatments have notbeen proven to be safe and effective in clinicaltrials. Some may even be dangerous or havelife-threatening side effects. The most com-mon danger is that you may lose the chanceto be helped by standard treatment.

Deciding what to do: It is easy to see whypeople with cancer may consider alternativetreatments. You want to do all you can to fightthe cancer. Sometimes mainstream treatments

such as chemotherapy can be hard to take.And sometimes they stop working.

At times like this, when people suggestthat their treatment can cure your cancerwithout serious side effects, it’s normal towant to believe them. But the truth is thatmost non-standard treatments have not beentested and proven to be effective for treatingcancer. As you consider your options, talk toyour doctor or nurse about any treatmentyou are thinking about using. Call theAmerican Cancer Society at 1-800-ACS-2345or visit www.cancer.org to learn more aboutthe specific treatments you are looking at.

With reliable information and the supportof your health care team, you may be able tosafely use methods that can help you whileavoiding those that could be harmful.

Hospice care

Hospice care is supportive or palliative caregiven near the end of life. The right time forhospice care is when treatment aimed at curingor controlling the cancer is no longer helpingthe patient. Together, the patient, family, anddoctor decide when hospice care should begin.Typically, patients are eligible for a hospiceprogram when they are thought to haveabout 6 months to live. Hospice care usuallycan continue longer than 6 months if yourdoctor continues to certify the prognosis.

Hospice seeks to manage a patient’sphysical and emotional symptoms. The goal ofhospice is to help patients live their last dayswith dignity and quality, surrounded by lovedones. Hospice care affirms life and neither

hurries nor postpones death. Its focus is onquality of life, rather than length of life.

Hospice programs offer family-centeredcare. They include the patient and family inmaking decisions. Hospice care is usually givenin the home, but it can also be given in a hos-pital, nursing home, or private hospice center.

In a hospice program, the hospice teamwill have a doctor who is the medical director,a nurse, a nurse’s aide, a social worker, and achaplain. In most cases, your own doctor willalso play a role.

Deciding to begin hospice care can be hard.An honest talk with your doctor can help youdecide if hospice care is the right thing to do.Consider the following:

• Ask whether any treatment your doctor suggests offers hope for a cure.

• If a cure is not possible, will the treat-ment prolong your life or relieve any ofyour symptoms?

You should think about hospice if yourdoctor can’t assure you that treatment willmeet any of these goals. A hospice programwill have the best chance of controlling yoursymptoms and keeping the quality of your life.

For more information, you may want tocontact the National Hospice and PalliativeCare Organization (NHPCO) at www.nhpco.orgor 1-800-658-8898.

Cost of care

It is always important to consider the cost ofcancer care, whether for cancer treatment orpalliative care. Insurance policies differ widely.Always check with your insurance company

to find out which services are covered. Manyinsurance companies will have a case coordi-nator who will be the main contact. Thisperson decides what is covered for each case.Most health insurance plans cover hospicecare. Medicare has a special hospice benefitthat not only covers care but also pays for allmedicines, with some restrictions.

For Medicare information, call the MedicareHotline at CMS (Center for Medicare andMedicaid Services): 1-800-633-4227 (1-800-MEDICARE), or TTY/TDD: 1-877-486-2048.They can explain what Medicare covers andhow to qualify. You can also visit them on theWeb at: www.cms.hhs.gov.

Serious illnesses often create a need for alot of money right away. In many states, deathbenefits from life insurance policies can beturned into “living benefits.” These benefits areavailable in several ways, such as selling thepolicy or borrowing against it.

Advanced directives(advance care planning)

Patients have the right to control their med-ical treatment. You can choose your course oftreatment, kind of treatment, and refuse anytreatment that you do not want. Every staterecognizes this right of “informed consent.”This means that the doctor or nurse explainsthe purpose, benefits, risks, and alternativesof the treatment before starting it. Generally,treatment can be given only if you agree to it.It is also generally accepted that a competentadult patient may refuse life-sustaining med-ical treatment or ask that such treatment bestopped even if the patient will die as a result.

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Informed consent includes the right to refusetreatment, as well as to agree to it. (For moreinformation, see the American Cancer Societydocument, “Informed Consent.”)

However, this right is not absolute; forexample, if you are unable to give consent orreceive information and you are in need ofimmediate care. In such instances, familymembers make medical decisions for spouses,parents, or adult children who cannot speakfor themselves. Whether such an informalarrangement will be accepted depends on themedical provider. Also, many states havepassed family agency acts that decide whichfamily members (in a listed order of priority)may act on behalf of a person who cannotspeak for her or himself. One way to keep yourrights is by writing down your wishes aboutyour future health care choices in what iscalled an advance directive.

An advance directive is a legal documentthat states your wishes about health carechoices. Even though others may be able tomake health care decisions for you withoutan advance directive, the directive offers moreassurance that your wishes will be carried out.It contains written directions or guidanceconcerning future medical care, and/or selectsa surrogate (a substitute, also called a proxyor agent) to act for you when you cannot actfor yourself.

Advance directives can be general, withfew directions about your care. Or, they canbe very specific, detailing your wishes regard-ing acceptance or refusal of all types of life-sustaining treatments. The directive may justname a proxy or surrogate person to makethese decisions for you if you are unable to do

so. Or it may include instructions, as well aschoosing your proxy. Some types of advancedirectives are limited to certain situationssuch as the living will, organ or tissue dona-tion, or your wishes not to be resuscitated(revived) if your heart or breathing stops.Regardless of the type, no one will be able tocontrol your money or other property basedon your advance health care directive. It mayalso help to know that you can also change orrevoke (take back) these directives at any time.

There are different formats for advancehealth care directives. Some follow formsoutlined in state laws, and others are createdby lawyers or even the patients themselves.The validity of these documents is decided bystate law and the courts. Although all statesand the District of Columbia have laws aboutadvance health care directives, the exactnames of the documents, restrictions, andother formalities vary quite a bit due to dif-ferences in state laws.

States generally do not require the use of aspecific form, although the states do havelegal requirements about what must beincluded and how the document is set up.Because language on a form may be vague andnot reflect your individual wishes, you shouldreview and change the words to reflect per-sonal values, priorities, and wishes. Youshould also know your state’s requirementsfor writing and legalizing advance directives.For example, states define the minimum agerequired to have a directive. In addition, allstates require that at least one adult not relatedby blood, marriage, or adoption witness yoursignature and date on the advance directive.Some states require 2 witnesses. You can

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usually get sample forms for advance direc-tives from your state, state bar association, orfrom the National Hospice and PalliativeCare Organization.

Before you create an advance directive, youwill also want to talk with your doctor, yourloved ones, and the person that you choose asyour proxy or surrogate (substitute decision-maker) about your situation, wishes, and fears.You will need to consider your options withthem because they are the ones who will helpput your wishes into effect if you are unableto do so.

All people receiving medical care in hospi-tals, enrolling in health plans, and enteringinto hospice or home care agreements mustbe given written information on their state’slaws concerning their rights to make deci-sions about medical care. This includes theright to accept or refuse medical or surgicaltreatment. In addition, you are entitledreceive information about your right to makean advance directive. Simple advance directiveforms are also usually available. However, itmay not be a good idea to wait until you arehospitalized to fill out a form. You may not beable to complete the form when you areadmitted and, even if you are, these forms arevery general and may not provide for all ofyour wishes.

You will find more detailed informationon the American Cancer Society Web pagein the document “Advance Directives.” Theseare available at www.cancer.org or by calling1-800-ACS-2345.

Support from others

A person with a life-threatening illness has agreat need for other people in his or her lifeto help deal with the illness and its emotionaleffects. These people provide what is called“social support.” Studies have shown thatpatients who have social support are betterable to adjust to their situation.

Support can come from family andfriends, members of a church, mental healthprofessionals, support groups, or communitymembers. Asking for support is one way youcan control your situation.

If you do not have support from friendsand family, seek it elsewhere. There are othersin your community who need your compan-ionship as much as you need theirs. The mutualsupport of others with cancer might also be asource of comfort. Ask your health care teamor a member of the clergy for resources inyour community.

Support programs and groupsA support group can be a powerful tool forboth patients and families. Talking with oth-ers in the same situation as yours can helpease loneliness. And you can also get usefulideas from others that might help you.

Support programs exist in many differentformats and some include individual orgroup counseling and support groups. Somegroups are formal and focus on learningabout cancer or dealing with feelings. Othersare informal and social. Some groups includeonly people with cancer or only caregivers,while others include spouses, family members,

14

or friends. Other groups focus on specifictypes of cancer or stages of disease. The lengthof time groups meet can range from a certainnumber of weeks to an ongoing program.Some programs have closed membership andothers are open to new, drop-in members.

For those who cannot attend meetings orappointments, counseling over the telephoneis offered by some organizations. Some peoplemay find online support groups helpfulbecause they like being anonymous. It maybe comforting to exchange emails with otherpeople facing similar situations. Chat roomsand message boards, however, are not the bestsource of cancer information, especially if theyare not monitored by trained professionals orexperts.

Regardless of the group’s structure, it isimportant for you to feel comfortable in thegroup and with the facilitator. If you have anyfears or uncertainties before entering a group,feel free to discuss them with the group’sfacilitator.

Support in any form allows you to discussyour feelings and develop coping skills.Studies have found that people who take partin support groups have an improved qualityof life, including sleep and appetite.

People with cancer often say that lack ofcommunication in their families is a problem.Changes in responsibilities can cause resent-ment and anxiety. Family counseling may helpfamily members learn to deal with changeswithin the family. It can also help membersdiscuss their feelings more comfortably.Counseling is especially helpful in familieswhere some members are not comfortableopenly discussing their feelings.

Religious or spiritual supportFor many, religion can be a source of strength.Some find new faith during a cancer experi-ence. Others find their cancer strengthens theirexisting faith or their faith provides newfoundstrength. A minister, rabbi, other leader ofyour faith, or a trained pastoral counselor canhelp you identify your spiritual needs and findspiritual support. Some members of the clergyare specially trained to minister effectively topeople with cancer and their families. Somehospitals have chaplains available at theirfacility.

Ask your health care team about theresources available at your hospital. You canalso contact your American Cancer Societyto find out about sources of support that areavailable in your community.

Family issuesAdvanced cancer changes the way familymembers relate to one another. Typically,families that solve conflict well and are sup-portive of each other do best in dealing witha loved one’s cancer. Other families may havea harder time with advanced cancer, and mayneed more outside help.

Roles within the family may change. Howfamily members take on new tasks and fill infor the patient will affect how they adjust tolosing that person.

For the person with cancer, the changes infamily roles can trigger the grief that comeswith loss. For example, a woman who isbedridden may be anguished about not beingthe wife and mother she once was. Under-standing this and helping the patient to findways to still contribute and feel included maybenefit both the patient and the family.

15

What else can friends do to help?One of the first things a friend or family mem-ber will often say is “What can I do to help?”You may be tempted to say “Oh, nothing rightnow. We’re just fine,” because you want yourprivacy and feel you have all you can handlewithout having people around you.Remember that people really do want to helpand it is likely that you will need some extrahelp during your cancer treatment. Yourfriends and family need to do things for youand support you. It helps them feel they are apart of your life. Allow them to help you bybeing as specific as possible about the kind ofhelp you need. For example, tell them whenyou will need a ride to the doctor, or find outif they can help you with housecleaning, meals,yard work, or child care. There will probablybe times when you won’t know what youneed, but even just saying that will be helpful.

Caregiver supportResearch has shown that the support offriends and family is important to both theperson with cancer and the caregiver. Care-givers often tend to feel isolated, depressed,anxious, and are less likely to reach out forhelp. They may also develop physical problemssuch as heart disease, high blood pressure,sleep problems, an increased risk of infectiousillness, and fatigue. Caregivers may not thinkmuch about it, but while they are helpingtheir loved one, they must also take care ofthemselves.

Overwhelming concern for a sick lovedone may be distracting. The caregiver may betorn between the needs of the patient, theirown needs, and the needs of the family. Manycaregivers forget to eat, don’t get enough sleep

or exercise, and ignore their own physicalhealth concerns. It is important for them tokeep their own doctor appointments, getenough sleep, exercise, eat healthy foods, andkeep their normal routine as much as possi-ble. It is important that they not feel guilty orselfish when asking for help or taking timefor themselves. By taking care of themselves,they are better able to take care of the personwith cancer. This also means taking time todo things they enjoy.

Facing death

Anyone with advanced cancer will at somepoint understand that he or she will not liveforever. Family members will recognize this,too. Even if the person with cancer is doingwell, death is a likely part of the future at somepoint. But thinking about death can be fright-ening and painful. Patients and families worryabout suffering before death and being alonewhen death occurs.

Many people with cancer want to be athome until the end. A long illness and dyingat home can be easier with the support offamily and medical staff. Often everyone’s goalis to help the person with cancer die at home,with his or her loved ones, with little or no pain.

The main goal for a death that cannot beavoided is a “good death.” A “good death” isdefined as one with the least possible amountof pain, discomfort, or suffering for the patient,and the least possible suffering for the familyand caregivers. A “good death” is one that is inline with the patient’s and loved ones’ wishes,including their culture, values, and ethics.Loved ones are supported in being with the

16

patient as much as they and the patient like,especially as death nears. Ideally, this allowsgoodbyes to be said and problems resolvedbefore death. It also allows loved ones to bewith the patient at the end.

When death is approaching Many people wonder about what happens justbefore death. This question usually is askedby a close family member or caregiver. Thefollowing section is intended to help withsome of the anxiety that surrounds the end oflife by looking at the process of dying.

This section lists some signs that deathmay be close. People often take advantage ofthis time to gather the family to say goodbyeto their loved one. They may take turns withthe patient, holding hands, talking to the

patient, or just sitting quietly. It can also be atime to perform any traditional religious ritu-als and other activities surrounding death. Itis a chance for many families and friends toexpress their love and appreciation for thepatient and for each other.

It is also important for you to have a planfor what to do after death, so that the familywill not have to make decisions during a veryemotional time. If the patient is in hospice,the hospice nurse and social worker will helpyou. If the patient is not in hospice, talk withthe doctor about it so that you will knowwhat to do at the time of death. Not all of thesymptoms reviewed in the following sectionwill happen, but it may be comforting toknow about them.

17

NOTES

Caregivers section

Possible changes in body function• Weakness, has trouble moving around in bed • Unable to change positions without help• Trouble swallowing food, medicines, or even liquids• Involuntary movement of any muscle, jerking of hands, arms, legs, or face

What caregivers can do• Help the patient turn and change positions every hour or two.• Avoid sudden noises or movements to lessen the startle reflex.• Speak in a calm, quiet voice to reduce chances of startling the patient. • If the patient has trouble swallowing pain medicines, ask the doctor or hospice

nurse for liquid pain medicines or pain patch.• If the patient is having trouble swallowing, avoid solid foods. Give ice chips or

sips of liquid. • Do not push fluids. Near the end of life, some dehydration is normal, and is

more comfortable for the patient.• Apply cool, moist wash cloths to head, face, and body for comfort.

Possible changes in consciousness• More sleeping during the day, hard to wake or rouse from sleep • Confusion about time, place, or people• Restlessness, may pick or pull at bed linen• May talk about things unrelated to the events or people present• May have more anxiety, restlessness, fear, and loneliness at night• After a period of sleepiness and confusion, may have a short time when he or

she is mentally clear before lapsing back into semi-consciousness

What caregivers can do• Plan your times with the patient when he or she is most alert or during the

night when your presence may be comforting. • When talking with the patient, remind her or him who you are and what day

and time it is. • Continue pain medicines up to the end of life.• If patient is very restless, try to find out if he or she is in pain. If it appears so,

give breakthrough pain medicines as prescribed, or check with the doctor orhospice nurse if needed.

• When talking with a confused person, use calm, confident tones to reducechances of startling or frightening the patient.

• Touching, caressing, holding, and rocking are all appropriate and comforting.

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Possible changes in metabolism • Less interest in food, as needs for food and drink decrease • Mouth may dry out (see changes in secretions)• May no longer need some of his or her medicines, such as vitamins, chemotherapy,

replacement hormones, blood pressure medicines, and diuretics (unless theyhelp make the patient more comfortable)

What caregivers can do• Apply lubricant or petroleum jelly (Vaseline) to the lips to prevent drying.• Give ice chips from a spoon, or sips of water or juice from a straw may be

enough for the patient.• Check with the doctor to see which medicines may be stopped. Medicines for

pain, nausea, fever, seizures, or anxiety should be continued to keep the patient comfortable.

Possible changes in secretions• Mucus in the mouth may collect in the back of the throat (This may be a very

distressing sound to hear, but doesn’t usually cause discomfort to the patient.) • Secretions may thicken and build up due to a lower fluid intake and inability

to cough

What caregivers can do• If mouth secretions increase, keep them loose by adding humidity to the room

with a cool mist humidifier. • If patient can swallow, ice chips or sips of liquid through a straw may thin

secretions. • Change patient’s position—turning to the side may help secretions drain from

the mouth. Clean the mouth with a soft toothbrush or toothette.• Certain medicines may help. Ask your hospice or homecare nurse.

Possible changes in circulation and temperature• Arms and legs may feel cool to the touch as circulation decreases• Skin of arms, legs, hands, and feet may darken in color and appear mottled • Other areas of the body may become either darker or pale• Skin may feel cold and either dry or damp• Heart rate may become fast, faint, or irregular• Blood pressure may get lower and become hard to hear

What caregivers can do• Keep patient warm with blankets or light bed coverings. • Avoid use of electric blankets, heating pads, etc.

19

Possible changes senses and perception• Vision may become blurry or dim • Hearing may decrease, but most patients are able to hear you even after they

can no longer speak• Leave indirect lights on as vision decreases.

What caregivers can do• Never assume the patient cannot hear you. • Continue to speak with and touch the patient to reassure him or her of your

presence. Your words of endearment and support are likely to be understoodand appreciated.

Possible changes in breathing• Breathing may speed up and slow down due to less blood circulation and build

up of waste products in the body • Rattling or gurgling with each breath may happen due to mucus in the back of

the throat• Longer pauses in breathing may occur, usually lasting from 10 to 30 seconds

What caregivers can do• Put the patient on his or her back, or slightly to one side. • Raising the patient’s head may give some relief. • Use pillows to prop head and chest at an angle or raise the head of a

hospital bed. • Any position that seems to make breathing easier is okay, including sitting up

with good support. A small child may be more comfortable in your arms.

Possible changes in elimination• Urine may become darker and decrease in amount • Loss of control (incontinence) of urine and stool may occur when death is near.

What caregivers can do• Pad bed with layers of disposable waterproof pads beneath the patient.• If the patient has a catheter, the home health nurse will teach you to care for it.

20

Grieving for the loss of aloved one

When a person loses someone important tothem, they go through a normal process calledgrieving. Grieving is a natural and expectedprocess which, over time, can allow a personto accept and understand their loss. Grievinginvolves feeling many different emotions overa period of time, all of which eventually helpthe person to come to terms with the loss ofa loved one.

Bereavement and mourning are otherwords that are commonly used to describethe grieving process. Bereavement is what aperson experiences when someone close tothem dies. It is the state of having suffered a

loss. Mourning is the expression of one’s lossand grief. Mourning includes behaviors andrituals that are specific to each person’s cul-ture, personality, and religion.

Many people think of grief as a singleinstance or very short period of pain or sadnessin reaction to a loss—for example, the tearsshed at a loved one’s funeral. However, theterm refers to the entire emotional process ofcoping with a loss. Normal grieving allows usto let a loved one go and continue with ourlives in a healthy way. Though grieving ispainful, it is important that those who havesuffered a loss be allowed to express theirgrief, and that they be supported throughoutthe process.

21

Signs that death has occurred• Breathing stops • Pulse stops• Eyes stop moving • Pupils of the eye stay large, even in the light• Control of bowels or bladder is lost as the muscles relax

What caregivers can do• After death it is okay to sit with your loved one for a while. There is no rush to

get anything done right away. Many families find this is an important time topray or talk together and reconfirm their love for each other as well as for theperson who has passed away.

• If the patient dies at home, certain people must be called. Rules or laws aboutwho must be called and how the body is removed differ from one community toanother. Your doctor or nurse can help you with this information. If you have ahospice or homecare agency involved, call them. If you have completed funeralarrangements, you may only need to notify the funeral director and doctor.

22

NOTES

23

Treatment Guidelines

Decision Trees

The Decision Trees, or flowcharts, on the following pages represent differentaspects of palliative care. Each one shows you step-by-step how you and yourdoctor can arrive at the choices you need to make about your treatment. Oneconstant theme throughout the decision trees is frequent checking and re-checking to find out whether care is satisfactory or not. Satisfactory care isdefined as the relief of the specific symptoms, and whether or not care meets thefamily’s expectations and goals. Other important aspects of satisfactory care areto maintain the best possible quality of life, and to make sure that patients feellike they have enough control over their care.

Keep in mind that the information in the decision trees is not meant to be usedwithout the expertise of your doctor, who is familiar with your situation, medicalhistory, and personal preferences.

The NCCN guidelines are updated as new significant data become available. Tobe sure that you have the most recent version, consult the Web sites of the ACS(www.cancer.org) or NCCN (www.nccn.org). You may also call the NCCN at 1-800-909-NCCN or the ACS at 1-800-ACS-2345 for the most recent information onthese guidelines or for information on cancer in general.

Screening for and assessingpalliative care needs The purpose of screening is to find out if palliative care is needed. This screening isdone by the health care team. Any one ofseveral situations suggest that palliative carecould be helpful. It should be considered forpatients who:

• have advanced cancer that cannot be cured

• have uncontrolled symptoms• are expected to live less than a year • have distress related to cancer diagno-

sis or treatment• have other serious medical, emotional,

or social problems

• have concerns about cancer and decision-making

• ask for palliative care or symptomrelief

The cancer care team considers severalfactors to help them determine if the patientis expected to live a year or less. These factorsinclude:

• How well the person can care for them-selves and carry out daily activities

• Whether the patient has complicationsof advanced cancer such as:

· too much calcium in the blood (hypercalcemia)

· liver or kidney problems · other serious medical conditions

24

Treatment Guidelines for Patients

At least one ofthese factors ispresent

Assess againat next visit

None of thesefactors arepresent

Screening

When considering your palliative care needs, your doctorand cancer care team will look for:

• Advanced cancer that cannot be cured with treatment

• Uncontrolled symptoms

• A life expectancy of 1 year or less

• Distress related to cancer diagnosis or cancer therapy

• Other serious medical, emotional, or social problems

• Your and your family’s concerns about cancer and decision-making

• Your or your family’s request for palliative care

25

· involvement of the central nervous system (brain and spinal cord)

· superior vena cava syndrome (swellingof the face or body, shortness of breath,and other problems caused by a partlyblocked vein near the heart)

· spinal cord compression (pressure onthe spinal cord causing pain and problems with urinating and walking)

· malignant effusions ( fluid leaking intothe space around the lungs, heart, orabdominal organs caused by cancer)

· weight loss and loss of appetite

If none of these situations or factors ispresent, the cancer team should check againat the next visit. If one or more is present, thepatient’s doctor or cancer care team will do afull review of the patient’s palliative careneeds. This is called a palliative care assess-ment (or evaluation).

During the palliative care assessment, thedoctor or cancer care team will consider thequestions listed on the Decision Tree. Each ofthese is discussed more thoroughly in indi-vidual Decision Trees.

©2008 by the National Comprehensive Cancer Network (NCCN) and theAmerican Cancer Society (ACS). All rights reserved. The information hereinmay not be reproduced in any form for commercial purposes without theexpressed written permission of the NCCN and the ACS. Single copies of eachpage may be reproduced for personal and non-commercial uses by the reader.

Screening for and assessing palliative care needs

Assessment

Your doctor or cancer care team will discuss the following with you:

• What are the benefits and risks of more cancer treatment? (see page 26)

• What are your goals, expectations and concerns? (see page 38)

• What symptoms do you have? (see page 28)

• What type of information do you and your family need? (see page 31)

• Do you have an advance directive (advance care plan)? (see page 29)

• Are you or your family distressed about any emotional, spiritual, family, or financialmatters? (see page 30)

• Will you need complex palliative care or early referral for palliative care? (see page 32)

Palliative care assessmentBenefits and risks of more cancertreatment If cancer has spread throughout the body, itgenerally cannot be cured. After a long battlewith cancer, the risks and discomforts ofcancer treatment may start to outweigh itsbenefits. Many people become aware, after

repeated treatments for cancer, that thetreatments are no longer working. Only thepatient can say whether or not they want togo on with treatment that is meant to pro-long life. That is why it is important to knowabout the risks and benefits of any treatmentbefore making a decision.

26


AssessmentIssue

What symptomsare present?

Do you have anadvance directive(advance care plan)?

What are the benefitsand risks of morecancer treatment?

Your doctor or cancer care team will consider:

• The usual course (typical history) of your type of cancer

• Likelihood of a response to treatment at this time

• How the cancer and its treament have affected yourvital organs

• Your ability to take care of yourself and do normal daily activities

• You and your family’s understanding of goals of cancer therapy

• Other medical conditions

Your doctor or cancer care team will ask you about:

• Pain

• Breathing problems

• Loss of appetite and weight loss

• Fatigue and weakness

• Problems with sleeping

• Confusion

• Depression or anxiety

• Nausea and vomiting

• Constipation

• Bowel blockage


• Living will or power of attorney for health care

• Your preferences about CPR

Recommendations for additional cancertreatment are generally based on existing NCCNtreatment guidelines for the person’s specificcancer type ( for example, breast, prostate, or

colorectal cancer), any past treatment andresponse to treatment, current status of theircancer, how well vital organs are working,and the patient’s overall health and ability to

27

Palliative care assessment


Treatment

See the Decision Tree for Cancer Treatment (page 34)

See the Decision Tree for Pain on page 42.

See the Decision Tree for Difficulty breathing on page 46.

See the Decision Tree for Loss of appetite and weight loss on page 50.

Your doctor is referred to the NCCN Cancer-Related Fatigue and Anemia Guidelines*

See the Decision Tree for Confusion on page 64.

Your doctor is referred to the NCCN Distress Management Guidelines*

See the Decision Tree for Nausea and vomiting on page 54.

See the Decision Tree for Constipation on page 58.

See the Decision Tree for Bowel blockage on page 60.

See Advance care planning on page 68.

* A free copy of the patient version of this treatmentguideline is available by calling 1-800-ACS-2345. Yourdoctor can view these guidelines at www.nccn.orgunder professional treatment guidelines

28

do daily activities. In some situations, cancertreatment may be given to relieve symptoms(palliative) and is not expected to cure thecancer or prolong life. It is important to under-stand the goal of each treatment that may beoffered. Ask the doctor what good it is expectedto do for you, as well as any drawbacks it mayhave, so you can decide for yourself if youwant the treatment

Presence of symptoms Palliative care refers to treatment of symptomswithout necessarily treating the underlyingcancer. Your cancer care team will want to knowif you have any of the symptoms listed in theDecision Tree.

As noted in the Decision Tree, treatmentof each symptom is discussed separately.


NOTES

Please refer to the page with the symptomyou want to read about.

Advance directives (advance care plan) It is very important for the health care teamto know about and understand any advancedirectives (advance care plans) that you have.

Developed by patients, advance directivesinclude written documents such as a livingwill or medical power of attorney. They alsoinclude your wishes about whether or not youwould want CPR in the event your heart orbreathing stopped.

29

Palliative care assessment (continued)

NOTES

Emotional or social distress Distress is a common symptom in patientswith advanced cancer. It can be related to manythings, such as a patient’s individual reactionto the cancer prognosis (outlook for survivalor progress of disease), lack of social support,and/or financial problems. Social support isgiven to patients by people who care aboutthem. It might include someone to talk toand discuss goals and plans with, someone tohold their hand and listen or take them for a

walk. It can also mean someone to help withbuying groceries or yard work. Support cancome from family, friends, your community,or cultural, spiritual, and/or religious groups.

Personal goals and expectations Patients should talk about their wishes andfamily needs. Goals, hopes, expectations, andconcerns regarding personal, spiritual orreligious, and cultural needs should also bediscussed and respected by the cancer care

30


Distress related to:

• Family

• Community

• Spiritual

• Financial

• Religious

• Social support problems

• Mental health issues

What are the patient’sgoals and expectations?

What information does thepatient and family need?


• Your current support system

• Your past coping strategies, strengths, vulnerabilities

• Financial problems


• Your wishes and family needs

• Priorities of palliative care (i.e., goals ofcancer treatment, quality of life)

• Whether you are ready for hospice or specialized palliative care services


• Your and your family’s values and preferencesand how information is communicated

• What you and your family already knowabout the status of your cancer

• Cultural factors that affect your care

AssessmentIssue

team. This is the time for patients to say whatthey would like to accomplish or do beforethey die. Further cancer treatment and what itmight mean for the patient and family may bepart of this discussion. At some point, symp-tom control and quality of life may becomemore important than cancer treatment. Thetreatment team will talk with the patientabout whether he or she is ready for palliativeor hospice care.

Education and information needs The cancer care team will want to know whatthe patient and the family understands aboutthe cancer and prognosis, and what morethey want to know. Ask them to explain any-thing you are unsure about or want to know.Make sure your cancer care team understandsany cultural factors that may affect yourcancer care.

31

Palliative care assessment (continued)


See the Decision Tree forSocial support on page 72

See the Decision Tree forYour personal goals andexpectations (page 38)

Treatment

Complex care assessment Some patients are likely to need more complexpalliative care than others. This is because theyhave unique needs. For example, the dosageof medicine will be different if the patient isan older adult or a child. The doctor or cancercare team will ask the patient specific ques-tions to find out whether complex palliativecare is needed. Reasons for complex care canbe divided into those that are related to thepatient, and those related to patient’s socialcircumstances, including the family and

support system. Patients who need complexcare can often benefit from having the pallia-tive care team called in earlier than those withfewer problems. This gives the team and familymore time to resolve palliative care issues.Patient-related issues are listed above.

Social circumstances, family, and financial issuesSocial and/or family-related issues are out-lined in the Decision Tree. Your cancer careteam will consider these, too. After looking

32


Issue

Need forcomplex care

Patient characteristics

Social or familycircumstances, orfinancial issues

at each of the listed factors, your doctor orcancer care team will decide if complex pal-liative care is needed at this time. If it is, carewill involve a team of doctors, nurses, mentalhealth professionals, and chaplains. It may be

necessary to call in a hospice/palliative carespecialist or team to help develop the pallia-tive care plan. The decision trees that followdiscuss specific palliative treatments or waysto deal with these problems.

33

Complex care assessment


Treatment

See Complex care(page 78)

Assessment

Your doctor or cancer care team will assess for:

• Limited treatment options

• Poor pain control or other symptoms

• Past or present mental or emotional problems, includingalcohol or drug abuse

• Unexpected admissions to the intensive care unit

• Bad reactions to treatments for pain and symptom control

• Whether you have a high distress score

• Confusion or trouble thinking clearly

• Severe medical problems

• Problems with communication (i.e. language problems, troublereading, or physical barriers)

• Repeated requests for physician-assisted suicide


• Lack of social support (family and friends)

• Relationships in which someone depends on you agreat deal (for example, young children)

• Family conflicts

• Limited access to care

• Multiple prior losses

• Spiritual crisis (questioning faith or the meaningor purpose of life)

• Money problems

• Concerns about care of dependents

• Family or caregiver limitations

Palliative care: Cancer treatment At any time during cancer treatment, yourdoctors are weighing the benefits and risks oftreatment. If the treatment is not going tomake you live longer or improve your abilityto do some of the things you want to do, it is

even more important for the doctor toexplain the risks and benefits of the types oftreatment that are still available. You will thenbe asked to make a difficult decision aboutcontinuing treatment or about differenttreatments or clinical trials.

34


Estimated life expectancy

TreatmentIssue

Your doctor or cancer care team will:

• Give you treatment as outlined in NCCN disease-specificguidelines*

• Discuss benefits and risks of cancer treatment includingpossible effects on quality of life and will clarify thegoals of treatment

• Ask you to consider the range of cancer treatmentchoices including clinical trials

• Try to prevent and manage symptoms related to cancertreatment


• Discuss how the focus of treatment shifts to quality of liferather than prolonging life

• Discuss how you might consider no further cancer treatment

• Provide guidance on disease course


• Suggest no further cancer treatment

• Intensify palliative care with possible referral to hospice

• Focus on symptom control and comfort

• Provide guidance on what to expect during the dying process

• Encourage you to help prepare loved ones

A year tomonths

Years

Months to weeks

Weeks to days

What kindof cancertreatmentwill youreceive?

When making these difficult decisionsabout cancer treatment, the doctor and cancercare team consider how long the patient islikely to live (estimated life expectancy). Theyusually consider it in terms of blocks of time:

• Years to months • Months to weeks • Weeks to days

Years to months life expectancy: Treat-ment during this time will be guided by theNCCN cancer treatment guidelines for thepatient’s specific cancer. For example, if apatient has prostate cancer, the doctor willreview the NCCN Prostate Cancer TreatmentGuidelines for recommendations about howto treat the cancer. He/she will discuss the

35


Palliative care: Cancer treatment

Reassessment

Satisfactory care:

• Adequate pain and symptomcontrol

• Reduced distress

• Relief of caregiver burden

• Best available quality of life

• Stronger relationships

• Personal growth

Unsatisfactory care

Your doctor or cancer careteam will:

• Continue cancer treatmentand palliative care


• Change or stop cancertreatment

• Consult or refer to hospiceor specialized palliativecare services

• Increase palliative careefforts

• Review patient hopesabout anti-cancer therapy

* These are available for your doctor at www.nccn.org.Some patient versions are also available by calling 1-800-ACS-2345.

benefits and risks of the cancer treatmentand make sure the patient understands thetreatment goals. The doctor will also try toboth prevent and treat any symptoms relatedto the cancer treatment and maintain thepatient’s quality of life.

Patients who feel good and are able to dotheir daily activities may be interested incontinuing cancer treatment to try to livelonger and/or try to reduce symptoms causedby their cancer. There may be a number ofdifferent cancer treatments to consider,including a clinical trial. However, your doctorshould make it clear that while the proposedpalliative treatment may reduce symptoms orprolong life, it will not cure the cancer. As longas the patient is doing well on this treatment,this treatment will be continued.

Months to weeks life expectancy:Patients here are likely to be growing tired oftreatment, are at home, and may be moreconcerned about the side effects of moretreatment. Your doctor should tell you whatis expected to happen with the cancer andoutline what might be achieved with furthercancer treatment. Patients may choose tostop cancer treatment at this point and shifttheir focus from treatment intended to pro-long life to treatment to improve the qualityof their life. Patients should also be told whatwill happen when they stop treatment, sothat they and their family or caregiver willhave an idea of what to expect. Referral to ahospice is also possible.

36


NOTES

Weeks to days life expectancy: At thispoint, care focuses on day-to-day symptomcontrol and comfort. Cancer treatment isusually stopped, unless it is providing comfortfor the patient. Patients may consider hospicecare. Your doctor can begin to tell you whatto expect during the dying process, andencourage the patient to help prepare lovedones for death.

After symptom control treatment isstarted, the cancer care team will determineif the treatment has been satisfactory.Satisfactory treatment provides pain and

symptom control, does not prolong dying,promotes a sense of control for the patient,helps relieve the caregiver burden, providesthe best quality of life available to the patient,and strengthens patient and family relation-ships. If the treatment is satisfactory, it will becontinued. If the treatment is not satisfactory,it will be changed or stopped. The cancer careteam may talk with a hospice or palliative careteam for help in making changes in the care.They may refer the patient to the team forspecialized palliative care services.

37

Palliative care: Cancer treatment (continued)

NOTES

38



TreatmentIssue


• Determine how much information you wish to have.Your preferences for information may change over time

• Answer questions about what to expect in months ahead

• Answer questions about dying

• Determine how you and your family make decisions

• Help resolve conflicts between your goals and expectations with those of your family

• Determine your desires with respect to quality of life

• Encourage you to review and revise your priorities, identify unfinishied business, resolve personal relationships, and put affairs in order

• Determine your readiness for hospice/specialized palliative care

• Foster realistic expectations

• Provide clear, consistent discussion with you and yourfamily about prognosis on an ongoing basis

• Help with advanced directives (see Advance care planning on page 68)

• Address cultural customs and beliefs

• Anticipate needs and provide anticipatory grief support

Your doctor will:

• Help you and your family prepare for end of life

• Facilitate anticipatory grief work

• Help you and your family understand what is happening

• Help you with plans to avoid dying alone

• Ensure continuing care

• Offer spiritual support

• Encourage planning for funeral or memorial service

A year tomonths

Years

Months to weeks

Weeks to days

Patient and familygoals, expectations,educational andinformational needs,and cultural factors

Palliative care: Your personal goalsand expectationsAt any stage of cancer, the goal of any treat-ment should be clear to both the patient andfamily. You should know if the goal of thetreatment is to cure the cancer, extend yourlife, or help with symptoms. Knowing theextent of the disease and its prognosis can

help you decide which type of care you wish toreceive. The patient’s personal beliefs, values,and wishes should be considered in makingdecisions about care.

Many people begin to question their life’sgoals and purpose when their cancer contin-ues to advance.

39


Palliative care: Your personal goals and expectations

Reassessment

Personal goals being met

• Reduction of stress

• Relieved caregiver burden

• Best possible quality of life

• Strengthened relationships

• Personal growth

Personal goalsnot being met


• Reassess your care

• Increase palliative care efforts

• Consult or refer to hospice or specialized palliative care services

A patient’s personal goals and expecta-tions may vary throughout the last year oflife. If someone has years to months to live, itis important to be sure they are mentally ableto make decisions and to understand theirdesires with respect to their remaining life.The doctor or cancer care team will ask howmuch information the patient wishes to haveand will let the patient take the lead on ask-ing questions about dying. How the familymakes decisions will also be looked at, tohelp ensure that patient and family goals arethe same. It should be noted that involve-ment of the family may change over time. The

doctor or cancer care team will try to helpresolve any family conflicts and talk aboutany cultural customs that may affect care.Patients are encouraged to review andreconsider what is important to them. Is thereunfinished business they wish to take care of?Or a difficult personal relationship they wishto resolve? Affairs should be put in order.

The cancer care team will continue tokeep the patient and family informed aboutthe expected course of the disease. They willdecide if the patient is ready for hospice orspecialized palliative care. The cancer careteam can also help with advance care planning

40


NOTES

(see page 68) and support the patient andfamily in the grieving process that beginswhen death is anticipated.

The cancer care team can help the patientand family prepare for the end of life, includingmaking sure that adequate care continueseven as the patient’s needs change. Arrange-ments will be discussed to have someone withthe patient so that he or she does not die alone.

Family members will need to understandwhat is happening and what to expect next.They often begin to grieve for the patient,and the doctor or cancer care team willwatch the family closely for any signs of

abnormal grieving. The cancer care team canprovide spiritual support and also encouragefamily members to start planning a funeral ormemorial service.

Once these things have been done, thecancer care team will again assess whetherthe patient’s personal goals are being met. Ifthe care is satisfactory, it will be continued. Ifthe care is not satisfactory, it will be changedor stopped. The cancer care team may talkwith a hospice or palliative care team for helpin making changes in care. They may refer thepatient to the team for specialized palliativecare services.

41

Palliative care: Your personal goals and expectations (continued)

NOTES

Palliative care: Managingsymptoms – pain A Year to Months or Months to Weeks: Duringthis time, the cancer care team will treat painfollowing the NCCN Cancer Pain TreatmentGuidelines. These specific guidelines treatcancer pain based on what is causing thepain and how severe it is. The guidelines alsooutline what the cancer care team should doif the patient’s pain is not being controlled.

Weeks to Days: The NCCN Cancer PainTreatment Guidelines are used to help managethe patient’s pain. However, as death nears,the goal is to provide care based on what thepatient wants. The cancer care team will askif there has been any change in patient orfamily preferences. Changes in pain treatmentwill continue to be made to keep the patientcomfortable while at the same time continuingto function ( for instance, to try and minimize

42



TreatmentSymptom


• Treat your pain as outlined in NCCNCancer Pain Guidelines*

In addition to the above, your doctor or cancercare team will:

• Give pain medicines to provide the best possiblerelief, even though it may decrease your abilityto function

• Reevaluate your pain control based on your andyour family’s preferences and goals of care

• Treat problems caused by opioids

• Avoid opioid withdrawal symptoms by not stopping medicine quickly

• Avoid reducing doses of opioid just because ofdecreased blood pressure or breathing rate

• Use different ways to give drugs as needed

• Consider sedation for pain that is not controlledby these measures

A year to months

OR

Months to weeks

Weeks to days

Pain

sleepiness, dizziness, or other side effects).However, this will depend on the patient’spreferences. Many patients will be receivingopioids (morphine-like drugs) for pain.Sometimes the dose of opioid pain medicineneeded to control pain may make the patientsleepy or dizzy. The cancer care team willcarefully monitor these drugs to make sure

that the dose is optimal and any side effectsfrom the opioids are managed. The doctormay change the way a drug is given if needed,for example, if the patient becomes unable toswallow a pill. Pain medicines can be given byinjection (“shot”), under the tongue, rectally,or as a patch on the skin. To make sure thepatient is comfortable at this stage, drug

43


Palliative care: Managing symptoms – pain

Reassessment

Satisfactory care

• Adequate pain and symptomcontrol

• Reduced distress



• Stronger relationships

• Personal growth

Unsatisfactory care


• Continue to treat your pain accordingto NCCN Cancer Pain Guidelines*

• Monitor symptoms and quality of lifeto determine if additional measuresare needed


• Continue to treat your pain accordingto NCCN Cancer Pain Guidelines*

• Consider consulting with pain management/palliative care specialist

* A free copy of the patient version of the treatmentguideline is available by calling 1-800-ACS-2345

doses will not be reduced if the blood pres-sure or breathing rate is low. If all these meas-ures fail to control pain, patients may begiven medicines strong enough to makethem sleep most of the time. This type of painmanagement is called sedation.

Once the symptoms are being treated, thecancer care team will look at whether thepatient’s personal goals are being met.Satisfactory care provides adequate paincontrol, does not prolong dying, promotes asense of control for the patient, helps relieve

44


NOTES

caregiver burden, and strengthens patientand family relationships. If the care is satis-factory, it will be continued. If the care is notsatisfactory, it will be changed. The cancer careteam may talk with the pain management orpalliative care team for help in making changes

in care. They may refer the patient to theteam for specialized palliative care services.

For more information on managing pain,please call the call the American CancerSociety at 1-800-ACS-2345 and ask for a copyof the printed booklet, NCCN Cancer PainTreatment Guidelines for Patients.

45

Palliative care: Managing symptoms – pain (continued)

NOTES

Palliative care: Managingsymptoms – difficulty breathing A Year to Months or Months to Weeks:During this time, the cancer care team willfind out what is causing the breathing prob-lem and how severe it is, and then treat thecause of the problem if possible. For example,if breathing difficulty is caused by anemia,

then the anemia will be treated; or if it’scaused by pain, then the pain will be treated.Oxygen may be given during this time to helpwith breathing. A respirator or ventilator(machine that breathes for the patient) mayeven be used for a short time if the problem islikely to get better with treatment. Otheroptions to help with breathing may include

46



TreatmentSymptom


• Find out how severe your breathing problem is

• Find and treat the cause of the problem, if possible

• Relieve symptoms

· Give oxygen to help with breathing

· Give medicines for anxiety

· Give opioids for cough

· Use non-medical therapies including fan, coolerroom, stress management, or relaxation therapy

· Use breathing machine (ventilator) for shorttime

· Use radiation or chemotherapy

· Remove fluid from around lungs

· Give antibiotics for pneumonia

· Give other medicines as necessary

• Provide education and emotional support

See page 48

A year to months

OR

Months to weeks

Weeks to days

Breathingdifficulty

radiation or chemotherapy treatment, orremoval of fluid that may have collectedaround the lungs. Antibiotics can be given forpneumonia. Other medicines can be used toexpand the airways or reduce the mucus inthe lungs. Usually patients feel anxious whenthey are unable to breathe well. This anxiety

can be treated with medicines to relieve thissymptom. Opioid pain medicines will beused to help reduce coughing. Non-medicaltreatments such as a fan, a cooler room, andrelaxation and stress management may alsobe used to help with symptoms.

47


Reassessment

Satisfactory care

• Adequate pain control

• Reduction of distress

• Relieve caregiver burden


• Stengthened relationships

• Personal growth

Unsatisfactory care


• Continue to treat and watch symptoms and quality of life todetermine whether change shouldbe made in care


• Increase palliative care efforts

• Consult or refer to hospice or specialized palliative care services

Palliative care: Managing symptoms – difficulty breathing

Weeks to days: Your doctor or cancer careteam will increase treatments to providecomfort and relieve symptoms. The opioidmedicines, those for anxiety or air hunger, andmedicines to reduce mucus in the lungs willbe continued. Oxygen will be given if it makesthe patient comfortable. Use of a ventilator willbe continued, withheld, or removed, basedon the patient’s expressed wishes or advance

directives. Sedation (giving medicines thatmake the patient sleep most of the time) mayhelp some patients. The doctor or cancer careteam will once again speak with the patientand family about their preferences. Extrafluids may be stopped if too much fluid iscausing the breathing problem. Sometimes,medicine to get rid of extra fluid in the bodymay be needed. The doctor or cancer care

48



TreatmentSymptom

Your doctor will:

• Find out how severe your breathing problem is

• Focus on comfort

• Relieve symptoms

· Give opioids for trouble breathing

· Give medicine for anxiety or air hunger

· Continue non-medical treatments

· Reduce mucus secretions with medicines

· Give oxygen if it provides relief

• Revisit your and your families preferences

• Withhold or remove ventilator if requested inadvance directive

• Sedate as needed

• Stop extra fluids support if too much fluid iscausing trouble breathing

• Provide information about difficulty breathingduring end of life

• Provide emotional support

Weeks to days

Breathingdifficulty

team will talk with the family about howbreathing problems may change or worsennear the end of life.

Once these symptoms are being treated,the cancer care team will determine whetherthe patient’s personal goals are being met.Satisfactory care provides adequate control ofbreathing, does not prolong dying, promotesa sense of control for the patient, helps relieve

caregiver burden, and strengthens patient andfamily relationships. If the care is satisfactory,it will be continued. If the care is not satisfac-tory, it will be changed. The cancer care teammay talk with the pain management or pal-liative care team for help in making changesin care. They may refer the patient to the teamfor specialized palliative care services.

49


Reassessment

Satisfactory care

• Adequate pain control


• Relieve caregiver burden


• Stengthened relationships

• Personal growth

Unsatisfactory care




• Intensify palliative care treatmentsand consider consultation withpalliative care specialist

• Consider sedation for uncontrolledsymptoms

Palliative care: Managing symptoms – difficulty breathing(continued)

Palliative care: Loss of appetite andweight loss Years to months: Patient care will focus onfinding and treating the cause of loss ofappetite and weight loss. The doctor willdetermine how much and how quickly weighthas been lost, and then search for underlyingcauses that can be treated. For example,sometimes patients may feel full early in ameal, so they stop eating. This may be treatedwith medicines.

A number of medical problems such aspain, nausea and vomiting, depression, con-stipation, or sores in the mouth or intestinemay also cause a person to eat less. All of theseconditions can be treated. Hormone problems,such as abnormal thyroid function, or lowlevels of sex hormones, such as testosterone,may affect food intake, so the doctor may wantto check hormone levels. The doctor or cancercare team will also review all the medicinesthat a patient is taking to make sure that they

50



TreatmentSymptom


• Evaluate how quickly you are losing weight

• Treat symptoms of early stomach fullness when eating

• Treat symptoms that interfere with eating (i.e., pain,depression, nausea, vomiting, constipation)

• Change medicines that may interfere with eating

• Consider prescribing an appetite booster

• Assess economic factors

• Consider referral to a dietitian

• Ask you to consider participation in a clinical trial

• Encourage an exercise program

See the Decision Tree on page 52

A year to months

Months to weeks

OR

Weeks to days

Loss of appetiteand weight loss

have not caused the appetite loss. In somecases, eating disorders or not having moneyto buy enough food can cause or contributeto eating less.

If no treatable medical cause can be found,the doctor may prescribe drugs to stimulateappetite. Referral to a nutritionist or partici-pation in a nutrition support clinical trial mayalso be considered. Finally, if the patient isable, an exercise program may help build-upstrength and prevent muscle loss.

Once these treatments have been started,the cancer care team and doctor will re-evaluate

to find out if the care is satisfactory. Weightshould be stable or improve, symptoms thatinterfere with eating should be better, andenergy levels should be higher. Any hormoneabnormalities or metabolic problems shouldbe improved. If care is satisfactory, care andmonitoring continues. If not, the care teamwill increase efforts at palliative care, consultwith nutritionist, or consider a nutritionsupport clinical trial if one is available forwhich the patient qualifies.

51


Reassessment

Satisfactory care

• Weight is stable or improving

• Improvement in symptomsthat interfere with eating

• Better energy level

• Improvement in other medicalor hormonal problems thataffect eating

Unsatisfactory care




• Increase palliative care treatments

• Consider consulting with dietitian

• Consider clinical trial

Palliative care: Loss of appetite and weight loss

Months to weeks or weeks to days: Thecancer care team will assess the importanceof patient symptoms related to nutrition.Recognizing that stopping food and fluids isa very difficult issue for the patient and fam-ily, the cancer care team will discuss what isgoing on with the cancer and explain thatpatients usually are not hungry or thirsty at

this time. If the patient wants to be treated, ashort course of steroids may be helpful. If thepatient is depressed, treating it may improveappetite. The risks of nutritional support(intravenous or tube feeding) will be discussed,including the risks of too much fluid in thebody and infection. Giving nutrition and fluidsupport can actually hasten death in some

52



TreatmentSymptom


• Assess the importance of symptoms to you and your family; if important, consider short course of corticosteroids

• Treat for depression

• Recognize that stopping nutritional support is a verydifficult issue

• Tell you and your family about the natural history ofdisease, including the following points:

· Absence of hunger and thirst is normal at this time

· Nutritional feedings (tube feeding or IV) may not be helpful

· There are risks with using nutritional support andfluids including too much fluid, infection, and hastened death

· IV fluids may speed removal of helpful drugs fromthe body

· Symptoms like dry mouth can be treated with localmeasures

· Stopping or withholding IV or tube feeding is permissible in this setting

• Focus on your wishes

• Help the family with other ways of showing they care


See page 50A year to months

Months to weeks

OR

Weeks to days

Loss of appetiteand weight loss

cases as a result of the complications that canoccur. Also, intravenous (IV) fluids can speedup the excretion of drugs from the body whenthese drugs are providing benefit to the patient.

Stopping IV or tube feedings is okay at thistime. It will not increase symptoms and it mayimprove some. Dry mouth can be treated withlocal measures such as giving small amountsof liquid or ice chips, cleaning the mouth, andmoistening the lips.

Now the focus is on what the patient wants. Once these symptoms are being treated, thecancer care team will check to find out

whether the patient’s personal goals are beingmet. Satisfactory care provides control ofuncomfortable symptoms, reduces patientand family distress, does not prolong dying,promotes a sense of control for the patient,reduces caregiver burden, and strengthenspatient and family relationships. If the care issatisfactory, it will be continued. If the care isnot satisfactory, it will be changed. The cancercare team may talk with the pain managementor palliative care team for help in makingchanges in care. They may refer the patient tothe team for specialized palliative care services.

53


Reassessment

Satisfactory care

• Adequate control ofappetite and weight loss





• Personal growth

Unsatisfactory care




• Increase palliative care treatmentsand consider consulting with palliative care specialist

Palliative care: Loss of appetite and weight loss (continued)

Palliative care: Nausea andvomiting Nausea and vomiting are usually treated thesame regardless of the life expectancy.However, it may be handled differently whenit first appears than if it continues (becomeschronic or persistent). The first step is to findout if the nausea and vomiting is related tocancer treatment (usually either radiation orchemotherapy). If this is the case, the doctorwill use the NCCN Nausea and VomitingTreatment Guidelines. Nausea and vomitingmay also be due to other medicines, thecancer itself, or some other cause. If possible,treatment is focused on the underlying cause.

For example, sometimes dehydration cancause nausea and vomiting. This may be cor-rected by either drinking more fluids, or if itis severe, giving IV fluids. If nausea and vom-iting are caused by a brain tumor, radiationmay be used to shrink the tumor and reducesymptoms. Any underlying problems with theliver or kidney will be corrected when possible.All the medicines that the patient is taking willbe looked at to see if they might be makingthe problem worse. For instance, opioid drugsused to treat pain can cause nausea and vom-iting. If this is the case, a different opioid drugor a different dose can be tried. Sometimesthe offending drug can be stopped altogether.

54



TreatmentSymptom


• Determine if nausea and vomiting are related tochemotherapy radiation therapy, cancer, other medicines, or another condition

• Determine if nausea and vomiting due to a braintumor; treat with steroids or radiation therapy

• Determine if symptoms due to blockage in stomach; treat with steroids or other medications

• If dehydrated, give fluids

• Stop any unnecessary medicines

• Evaluate pain medicines (i.e., opioids) and tryreducing the dose or try a new drug

• Consider consulting with psychiatrist if eatingdisorder, panic disorder, or some other emotionaldisorder is present

• Give medicine (anti-emetics) for nausea and vomiting if no underlying cause found

Years to months

OR

Months to weeks

OR

Weeks to days

Nausea andvomiting

A psychiatric evaluation may be helpful if thepatient has an underlying eating disorder,phobia, or panic disorder.

If no underlying cause can be found,medicines (anti-emetics) are given to treat thenausea and vomiting as symptoms. Thesedrugs are usually given by mouth, but if thenausea and vomiting is too severe, the drugsmay be given as IV (intravenous), as an injec-tion under the skin (subcutaneous or SQ), or

as a rectal suppository. Steroids can be givenby mouth if the nausea and vomiting isrelated to brain cancer or tumor blockingthe stomach.

If the nausea and vomiting stops, thecancer care team will keep re-checking tomake sure that the treatment is still working.If nausea and vomiting persist, additionaltreatment is required, as described in thenext Decision Tree.

55


Reassessment

Nausea and vomiting stops

Nausea and vomiting persists


• Keep checking to make sure treatment is still working

See page 56

Palliative care: Nausea and vomiting

Persistent nausea and vomiting Persistent nausea and vomiting is treated byadding treatments until symptoms are relieved.In the first step any combination of 3 classesof drugs may be used:

• 5-HT3 antagonists (newer drugs suchas ondansetron or Zofran®, commonlyused to control nausea fromchemotherapy)

• anticholinergics (older drugs such asscopolamine that are often used formotion sickness or intestinal cramps)

• antihistamines (intended for allergies,but sometimes used to treat vertigo orimprove appetite).

If the response is not good, oral steroidsmay be added. If the symptoms are still notcontrolled, different routes for the medicineswill be considered, such as intravenous (IV)or subcutaneous injection (a “shot”). Finally,other measures such as cannabinoids (whichare compounds found in marijuana that areused to improve appetite) or sedation (givingmedicines to make the patient sleep most of

56


Symptom Treatment


• Treat you with a 5-HT3 antagonist (such asondansetron or Zofran®) with or withoutan anticholinergic, with or without anantihistamine.

If nausea and vomiting persists:

• Treat you with a corticosteroid.


• Consider using IV or subcutaneous injec-tion anti-nausea medicine.


• Consider other therapies, including other medicines, sedation, or accupuncture

Persistentnausea andvomiting

the time) may be added. Alternative treat-ments such as acupuncture may also be tried.

Once these symptom management treat-ments are in place, the cancer care team willcheck to find out whether the patient’s personalgoals are being met. Satisfactory care providesadequate control of nausea and vomiting,does not prolong dying, promotes a sense ofcontrol for the patient, helps relieve caregiver

burden, and strengthens patient and familyrelationships. If the care is satisfactory, it willbe continued. If the care is not satisfactory, itwill be changed. The cancer care team maytalk with the pain management or palliativecare team for help in making changes in care.They may refer the patient for specializedpalliative care services or for hospice.

57

Reassessment

Satisfactory care

• Adequate control of persistentnausea and vomiting





• Personal growth

Unsatisfactory care


• Continue to treat andwatch symptoms and quality of life to determinewhether change should bemade in care


• Increase palliative treatmentsand consider consulting withpalliative care specialist

Ongoingreassessmentfor nauseaand vomiting,(see page 54)

Persistent nausea and vomiting


Palliative care: Constipation The evaluation and treatment of constipationis the same regardless of the life expectancy.Measures can be looked at as either prevent-ing or treating constipation. Because many ofthe drugs that are used to treat pain are knownto cause constipation, preventive treatmentssuch as stool softeners and laxatives are usu-ally started at the same time these medicinesare started. Taking in enough fluid is importantbecause dehydration worsens constipation.

Getting enough fiber is also helpful to increasestool bulk. Finally, an exercise program is rec-ommended if the patient is able. The goal ofthese measures is for the patient to have oneunforced bowel movement every day or two.

If constipation does occur, the first step isto search for and treat any underlying cause.This may involve x-rays to make sure that theintestine is not blocked by cancer or otherconditions. A fecal impaction is a severe formof constipation where there is a mass of hard

58


Estimated lifeexpectancy

Preventivemeasures

TreatmentSymptom

Preventive measuresinclude:

• Using laxatives andstool softeners

• Increasing fluid intake

• Increasing dietaryfiber

• Exercise, if appropriate

If constipation occurs, your doctoror cancer care team will:

• Look at what is causing constipation and how severe it is

• Rule out severe constipation(fecal impaction)

• Make sure there is not blockageby tumor or other causes

• Treat underlying causes, if any

• Give medicines to promotebowel movement

• Use suppositories or removefeces by hand

• If constipation persists:

· Reassess causes

· Re-check for impaction orblockage

· Consider adding other laxativesand types of ememas

Years to months

OR

Months to weeks

OR

Weeks to days

Constipation

stool blocking the rectum. Fecal impaction mayrequire enemas or removal of the stool byhand. If constipation persists, other laxativesenemas, or agents may be recommended.

Once this symptoms is treated, the cancercare team will determine whether the patient’spersonal goals are being met. Satisfactory careprovides adequate control of constipation,does not prolong dying, promotes a sense of

control for the patient, helps relieve caregiverburden, and strengthens patient and familyrelationships. If the care is satisfactory, it willbe continued. If the care is not satisfactory, itwill be changed. The cancer care team maytalk with the pain management or palliativecare team for help in making changes in care.They may refer the patient to the team forspecialized palliative care services.

59

Palliative care: Constipation

Reassessment

Satisfactory care

• Adequate control of constipation





• Personal growth

Unsatisfactory care





• Increase palliative treatmentsand consider consulting withpalliative care specialist

Palliative care: Bowel blockage(obstruction)Years to months/months to weeks: The firstevaluation of a blocked bowel (also calledmalignant bowel obstruction) focuses onfinding causes that can be treated. Prior radi-ation therapy or even a hernia can cause

scarring or tightening that can block theintestine. Blockage can also be caused by theunderlying cancer, which can block theintestine from the inside, or press on it fromthe outside. The intestine may be partly orcompletely blocked, but it sometimes startsout partly blocked and slowly gets worse.

60



Treatment


• Check for underlying causes related to cancer

· scarring (adhesions)

· effects of radiation, such as narrowing of bowel

· hernia

• Find out if blockage is due to cancer

• Assess your treatment goals

· decrease nausea and vomiting

· allow you to eat

· decrease pain

· allow you to go home or to hospice

A year to months

OR

Months to weeks

Weeks to days

Bowelobstruction


• Consider medical treatment over surgery

• Assess your treatment goals

· decrease nausea and vomiting

· allow you to eat

· decrease pain

· allow you to go home or to hospice

Symptom

Once the cause of the blockage is found,the main concern is whether or not it shouldbe treated with surgery. This decision will bemade in light of the other symptoms and thepatient’s goals and wishes. For example, bowelobstruction may be causing nausea and vom-iting or inability to eat. It may be the reason

the patient is hospitalized. Treating the block-age may ease these symptoms and allow thepatient to go home or back to hospice care.

Besides surgery, there are less invasiveways to help relieve symptoms. A tube can beplaced through the skin into the stomach todrain out fluids that cause vomiting. Fluids

61

Reassessment

Unsatisfactorycare

Your doctor or cancercare team will:

• Continue to treat and watch symptomsand quality of life todetermine whetherchange should bemade in care

Your doctor or cancercare team will:

• Increase palliative treatments and consider consultingwith palliative care specialist


Your doctor may choose one or more ofthe following treatments:

• Surgery

· after discussing risks with you andyour family

· the goal of surgery is to make qualityof life better

• Less invasive methods

· putting tube through skin into stomach to drain fluids

· placing tube (stent) inside bowel tokeep it open

• Drug therapy

· medicine given other than orally, suchas rectally, IV, injection, or skin patch

· opioid patch

· anti-nausea and vomiting drugs insome cases

· other drugs, including steroids

• If dehydrated, give fluids by intravenous (IV) or under the skin

• If vomiting not controlled, place a tubedown throat to drain fluids

• If life expectancy is months to years,deliver nutrition by IV (i.e., total parenteral nutrition or TPN)

Palliative care: Bowel blockage (obstruction)

Satisfactory care

• Adequate control of bowelblockage


• Relief of caregiverburden



• Personal growth

can also be removed by a tube insertedthrough the nose and going down into thestomach. Since this is uncomfortable for thepatient, it is only used if other treatments donot reduce vomiting. Sometimes the intestinalblockage can be helped by placing a tube(stent) through the narrowed section to keepthe bowel open. Several kinds of drugs maybe helpful, including opioids, steroids, or anti-nausea drugs in some situations. Often the

drugs cannot be given by mouth, and are givenintravenously (IV), in a rectal suppository,injected under the skin (subcutaneous), or ina skin patch. Nutrition may be given withspecial fluids called total parenteral nutrition(TPN). TPN is best used for those whose lifeexpectancy is many months to years.

Weeks to days: Surgery is generally nothelpful if the patient is expected to live lessthan a month, so the focus is on less invasive

62


NOTES

NOTES

care. Medical care must be planned aroundthe patient’s symptoms and treatment goals,as described in the Decision Tree.

Once symptom management treatmentsare in place, the cancer care team will look atwhether the patient’s personal goals arebeing met. Satisfactory care provides adequatecontrol of symptoms related to the blockedbowel, does not prolong dying, promotes a

sense of control for the patient, helps relievecaregiver burden, and strengthens patientand family relationships. If the care is satis-factory, it will be continued. If the care is notsatisfactory, it will be changed. The cancercare team may talk with the pain managementor palliative care team for help in makingchanges in care. They may refer the patient tothe team for specialized palliative care services.

63

Palliative care: Bowel blockage (obstruction) (continued)

Palliative care: Confusion A year to months and months to weeks: Thedoctor or cancer care team will first look atwhat might be causing the confusion in orderto treat it. Sometimes confusion is caused byanother problem in the body. Confusion willoften improve when the other problem istreated. Infection, blood chemistry imbal-

ances, and blockage of the bladder or bowelare examples of problems that can make aperson confused. If the confusion is severe, aneuroleptic drug may be used until thepatient’s symptoms are under control.(Neuroleptic drugs, sometimes called “majortranquilizers,” are often used to help peoplewho have lost touch with reality.) An anti-

64


Symptom TreatmentEstimated lifeexpectancy

Severe confusion

Cause ofconfusion isnot relatedto cancer

Cause of confusionis relatedto cancer

Mild confusion


• Find and treat the cause· Liver problems· Bowel blockage· Brain and nervous

system problems· Bladder blockage· Medicine withdrawal· Infection

Years to months

OR

Months to weeks

Weeks to days

Confusion

anxiety medicine may be added if the patientis agitated. If the confusion is mild, the anti-anxiety drug is not usually needed. With mildconfusion, it helps for the family to be present

and remind the patient often about things heor she forgets, such as where they are andwhat’s going on.

65

Reassessment

Satisfactory care

• Adequate controlof confusion

• Distress reduced

• Caregiver burdenrelieved

• Best possiblequality of life

• Strengthenedrelationships

• Personal growth

Unsatisfactorycare

Your doctor will:

• Continue to treat andwatch symptoms andquality of life to deter-mine whether changeshould be made in care

Your doctor will:

• Increase palliativecare treatments andconsider consultingwith palliative carespecialist


• Determine that confusion and agi-tation are not mistaken for pain

• Adjust opioid drug

• Focus on symptom control andfamily support

• Increase medicines for confusion,may give medicine to help sleep

• Stop unnecessary medicines andremove tubes that are no longerneeded

• Educate family and caregiver andprovide emotional support


• Treat cause if possible and providesymptom relief


• Give medicine until episode is undercontrol, then reduce the dose

• Give other medicines if needed

• Support caregiver


• Give medicines for confusion

• Have family remind patient of surroundings and situation


Palliative care: Confusion

Weeks to days: Again, the cancer careteam will look for the cause of the confusion.If the cause is not related to the cancer, theywill treat the cause, if possible, and relieve thesymptom. Sometimes confusion can be mis-taken for increased pain, prompting higherdoses of opioid pain medicines, which can fur-ther increase confusion. In this situation, if the

confusion is related to the cancer, opioid painmedicine will be adjusted. Some medicinescan be stopped at this time, and unnecessarytubes can be removed. The doctor will focus oncontrolling symptoms and support the familyduring this difficult time. The medicines forconfusion may be increased and other medi-cines may be given to help the patient sleep.

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NOTES

Once the symptom is treated, the cancercare team will determine whether the patient’spersonal goals are being met. Satisfactorycare provides adequate control of confusion,does not prolong dying, promotes a sense ofcontrol for the patient, helps relieve caregiverburden, and strengthens patient and family

relationships. If the care is satisfactory, it willbe continued. If the care is not satisfactory, itwill be changed. The cancer care team maytalk with the pain management or palliativecare team for help in making changes in care.They may refer the patient to the team forspecialized palliative care services.

67

Palliative care: Confusion (continued)

NOTES

Palliative care: Advance directives(advance care planning) Advance care plans are developed by thepatients, and are discussed on page 12.Examples of advance directives include a

living will, health care power of attorney, CPRpreference, and readiness for hospice or specialpalliative care.

A year to months: Advance care planningin patients with months to a year to live

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Treatment


• Determine palliative care options, including hospice

• Consider introducing you to the palliative health care team

• Determine your values and preferences for end-of-life careand how they agree with values and preferences of your family and health care team

• Provide information about advance directives and encourageyou to consider at what point you might prefer a DNR‡ option

• Encourage you to discuss wishes with family

• Encourage naming a health care proxy

• Ask about your desire for organ donation and/or autopsy

• Determine where you want to die

• Clarify guardian concerns for dependents and explore fearsabout dying and address anxiety


• Determine where you want to die

• Confirm and ensure that your wishes are written in your record

• Ensure advance care directives are available to all caretakersregardless of treatment setting

• Help resolve conflicts between patient and family wishes

A year tomonths

Months to weeks

Weeksto days

Advancedirectives(Advance careplanning)


• Ensure advance care directives are available to all caretakers regardless of treatment setting

• Ensure compliance with advance care directives

• Follow your directions for DNR‡

• Help resolve conflicts between patient and family wishes

should include an open discussion of theoption of palliative care, how the patient feelsabout palliative care, and the patient’s valuesand preferences for end-of-life care. Thecancer care team will compare the patient’srequests with those of the family and mem-bers of the cancer care team.

They will discuss with the patient whatadvance directives are and ask the patient tothink about whether resuscitation is desired.Where the patient wishes to die – at home orin a hospital – should be decided and madeknown. The patient will be asked for thename of the person who will serve as the

69

Palliative care: Advance directives (advance care planning)

Reassessment

Satisfactory care

• Adequate advance care planning





• Personal growth

Unsatisfactory care


• Provide ongoing re-evaluation andcommunication between you andyour health care team


• Increase efforts to communicate palliative care options

• Consider referral to mental health professional to evaluate for depression

• Use the NCCN Distress ManagementGuidelines*

‡ DNR = “do not resuscitate,” a decision not to do CPR

* The guideline for your doctor is available at www.nccn.org.A free copy of the patient version is available by calling 1-800-ACS-2345.


health care proxy and about wishes regardingorgan donation and autopsy. Concerns aboutguardian plans for dependents, such as youngchildren, should be addressed. This is also thetime that the patient and cancer care team candiscuss fears and address anxiety about dying.

Months to weeks: The cancer care teamwill confirm patient wishes and make sure thatthey are written in the patient record andthat these are available to anyone who may

be caring for the patient. The doctor or careteam may also help resolve any conflictbetween the patient’s treatment goals andthe family’s.

Weeks to days: The cancer care team willcontinue to help make sure all advance caredirectives are available to everyone who iscaring for the patient and that the advancedirectives are followed. If conflicts persistbetween the patient and family’s wishes, a

70


NOTES

chaplain or ethicist may be needed. The careteam will also help see that the patient requestfor “do not resuscitate” (DNR) is honored.

Once these measures are in place, thedoctor or cancer care team will determinewhether the patient’s personal goals are beingmet. If the care is satisfactory, the doctor willprovide an ongoing evaluation and commu-nication between the patient and cancer care

team. If the care is not satisfactory, it will bechanged. The cancer care team will increaseefforts to talk with the patient and familyabout palliative care options. They may con-sider referring the patient to a mental healthprofessional to find out if the patient isdepressed. The NCCN Guidelines on DistressManagement may also be helpful.

71

Palliative care: Advance directives (advance care planning) (continued)

NOTES

Palliative care: Social support Social support includes support from one’sfamily and community, religious or spiritualsupport, and support from one’s culture.Patients define who their support system is.Each person may turn to all or just one ofthese for their support.

A year to months or months to weeks:During this time, the doctor or cancer careteam will ensure that the patient has a safehome environment and that a caretaker (orcaregiver) is available to help the patient. Theywill also see that transportation is available forhospital or doctor visits. Financial resources

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TreatmentIssue


• Ensure that you have a safe home environment

• Ensure caretaker(s) are available

• Ensure that you have transportation

• Refer to social services to help with pulling togetherthe resources that you need

• Ensure adequate caretaker support and education

• Respond to caregiver’s needs and stresses

• Discuss personal, spiritual, and cultural issuesrelated to your prognosis (your disease outlook)

• Identify any cultural customs or beliefs that maymake it harder for you to get effective care

• Use translators not related to you and your familyas needed

• Follow the NCCN Distress Management Guidelines*for spiritual/religious issues

• Assess bereavement risk

• Help family and caregiver when they need a breakfrom caregiving

A year to months

OR

Months to weeks

Weeks to days

Social support

• Family

• Community

• Cultural

• Spiritual

• Financial

• Caregivers

• Religious

See the Decision Tree on page 76

will be identified and social services will beasked to help pull together resources thepatient may need. Since the caregiver will havea lot of responsibility, they will see to it thatthis person has the support and educationneeded to provide good care. The team willbe available to help the caregiver’s needs and

stresses, and help the caregiver identify waysto get a break from caregiving (called respitecare) if that is needed. The patient’s personal,spiritual, and cultural needs and wishes willbe reviewed and discussed. The team willlook at the caregivers’ and family’s ability tocope with grief, and identify any factors that

73

Palliative care: Social support

Reassessment

Satisfactory care

• Adequate social support andresource management





• Personal growth

Unsatisfactory care









might complicate bereavement (the sense ofloss and the process of mourning after thepatient’s death.)

Any customs or beliefs that might causeproblems for the patient in getting care will beidentified. If a translator is needed, a medicaltranslator who is not related to the family

should be found. The NCCN has publishedDistress Management Guidelines that addressspiritual/religious issues that the doctor orcancer care team can refer to for additional care.

Once these measures are in place, thedoctor or cancer care team will determinewhether the patient’s personal goals are being

74


NOTES

met. If the care is satisfactory, the doctor willprovide an ongoing evaluation and commu-nication between the patient and cancer careteam. If the care is not satisfactory, it will bechanged. The cancer care team will increaseefforts to talk with the patient and family

about palliative care options. They may con-sider referring the patient to mental healthprofessionals to determine if the patient isdepressed. The NCCN Guidelines on DistressManagement may be used.

75

Palliative care: Social support (continued)

NOTES

Weeks to days: Here the doctor or cancercare team will have a clear discussion with thepatient and family about prognosis (outlookfor survival) on an ongoing basis, includinginformation on what to expect with thecancer. They will let the patient know thatkeeping him or her comfortable is the mainconcern. They will explain what usuallyhappens during the dying process, including

expected events, to family members. Thecancer care team may need to get help toresolve any remaining conflicts between thepatient and family about the goals of treat-ment. Time will be given for the patient andfamily to be together without interruption.Respect will be given to any cultural customsor beliefs that might require changes in thepatient’s care.

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TreatmentIssue


• Provide clear, consistent discussion with you andyour family about prognosis on an ongoingbasis, including information about how yourtype of cancer usually progresses

• Let you know that comfort is the main concern

• Explain the death process and expected eventsto family members

• Provide uninterrupted time to you and yourfamily members

• Respond to caregiver’s needs and stresses

• Identify any cultural customs or beliefs that maymake it harder for you to get effective care

• Use translators not related to you and yourfamily as needed

• Assess bereavement risk


• Address your and your family’s conflicts aboutthe goals of treatment

Weeks to days

Social support

• Family

• Community

• Cultural

• Spiritual

• Financial

• Caregivers

• Religious

Once these measures are in place, thedoctor or cancer care team will determinewhether the patient’s personal goals are beingmet. If the care is satisfactory, the doctorwill provide an ongoing evaluation and com-munication between the patient and cancercare team. If the care is not satisfactory, it

will be changed. The cancer care team willincrease efforts to talk with the patient andfamily about palliative care options. They mayconsider referring the patient to mental healthprofessionals to determine if the patient isdepressed. The NCCN Guidelines on DistressManagement may also be helpful.

77

Palliative care: Social support (continued)

Reassessment

Satisfactory care

• Adequate social support andresource management





• Personal growth

Unsatisfactory care









Palliative care: Complex careSome patients might need more complexpalliative care earlier in their treatment, asidentified by the risk factors listed on page 32.

The doctor or cancer care team will workwith others and refer to health care profes-sionals as needed for palliative care, mentalhealth services, social services, heath careservices, and interpreters, if needed. Religious,

school, and community groups will be ralliedto support the patient and family with anyproblems that have been identified. Hospiceor specialized palliative care services will berequested.

Once these measures are in place, thedoctor or cancer care team will look to seewhether the patient’s personal goals are beingmet. If the care is satisfactory, the doctor and

78


Treatment


• Work with other doctors treating you

• Consult with the palliative care team

• Refer to appropriate health care professionals

· Mental health

· Social services

· Health care interpreters

· Others

• Rally community support

· Religious

· School

· Community agencies

• Refer to hospice/specialized care services

One or morepatient or familyproblems that mayrequire complexcare (see page 32)

health care team will continue to evaluate it,communicating with the patient and familyabout what is happening. If the care is notsatisfactory, it will be changed. The cancercare team will increase efforts to talk with the

patient and family about palliative care options.They may consider referring the patient to amental health professional to evaluate forand treat depression, trouble adjusting to thecancer diagnosis, or other emotional disorders.

79

Reassessment

Satisfactory care

• Patient satisfied withresponse to treatment





• Personal growth

Unsatisfactory care


• Provide ongoing evaluation andcommunication between you andyour health care team


• Increase efforts to communicatepalliative care options

• Consider referral to mental healthprofessional to evaluate and treatfor depression or other emotionaldisorders


Palliative care: Complex care

Palliative care: Specialized careduring the final days to hours During the final days to hours, the doctor andcancer care team will focus on patient andfamily comfort. They will help the family andcaregivers by doing the things listed in theDecision Tree above.

The care team will also help the familyand caregivers to be sure that you can get anymedicines you need ( for pain or symptom

relief) in other ways than by mouth. Thisbecomes more important as the end nearsand you are less able to swallow pills or liq-uids. In the event that symptoms such as painor vomiting cannot be controlled with medi-cines, measures such as sedation can be con-sidered. If you are in the hospital, the careteam may try to get you into a private room,and help your family find a separate space toexpress their grief privately.

80



• Watch you closely

• Provide a private room, if possible

• Stop diagnostic tests

• Turn you for comfort when needed

• Avoid unnecessary needle sticks

• Keep your mouth clean and moist

• Watch for severe constipation and no urine output

• Make sure medicine can be given ways other than bymouth

• Allow you and your family time together

• Ensure that your family understands the dyingprocess and knows what to expect

• Provide support to children and grandchildren

• Encourage visits by children if consistent with familyvalues

• Help family to be present around-the-clock

• Ensure that caregivers and family understand and willhonor your advance directives

• Provide respectful space for family members

• Make sure that “good-bye’s” are said

• Consider sedation to relieve uncontrolled symptoms

Final daysand hours

Treatment

81

Palliative care: Specialized care during the final days to hours


NOTES

Palliative care: Care for the familyand caregivers after death Palliative care for the patient’s family andcaregivers continues after the patient’s death.Immediate issues include making sure thatthe body is treated in a sensitive and respect-ful way that takes any special cultural needs

into consideration. Other needs includemaking sure that the family has time with thebody, making funeral arrangements, com-pleting all paperwork, and notifying all thenecessary insurance companies and healthcare professionals.

82



• Provide immediate support

· Remove IV’s catheters, and implanted devices

· Provide for the family’s cultural needsregarding care of the body

· Allow family time with the body

· Address concerns regarding organ donationor autopsy

· Assist in notifying other health care providers

• Provide support with grieving

· Identify the available support to help familyand caregivers with grieving

· Help identify community grief and bereavement resources

· Look for help for family or caregivers whoare having trouble coping with death

• Attend debriefing meeting with family, if family wants one

• Discuss cancer risk with other family members

A “good” death

• Free from distress andsuffering for patient,family, and caregivers

• Has met patient andfamily’s wishes

• Was consistent withclinical, cultural, andethical standards

Care for family and caregiver

Grief is a normal part of bereavement butfamily members should be watched for signsof grieving that may not be normal. Thisshould be identified and treated. The familymay request a meeting (debriefing) with thedoctor or cancer care team to help themunderstand everything that happened. They

may need help finding grieving resources intheir community. This care is usually bestprovided by hospice staff or an experiencedmental health professional.

Finally, the doctor may want to discusscancer risk in other family members and out-line steps that can be taken to reduce this risk.

83

Palliative care: Care for the family and caregivers after death


Current cancer treatment guidelines for patients

Advanced Cancer and Palliative Care Treatment Guidelines for Patients(English and Spanish)

Bladder Cancer Treatment Guidelines for Patients (English and Spanish)

Breast Cancer Treatment Guidelines for Patients (English and Spanish)

Cancer Pain Treatment Guidelines for Patients (English and Spanish)

Cancer-Related Fatigue and Anemia Treatment Guidelines for Patients(English and Spanish)

Colon and Rectal Cancer Treatment Guidelines for Patients (English and Spanish)

Distress Treatment Guidelines for Patients (English and Spanish)

Fever and Neutropenia Treatment Guidelines for Patients with Cancer(English and Spanish)

Lung Cancer Treatment Guidelines for Patients (English and Spanish)

Melanoma Cancer Treatment Guidelines for Patients (English and Spanish)

Nausea and Vomiting Treatment Guidelines for Patients with Cancer(English and Spanish)

Non-Hodgkin’s Lymphoma Treatment Guidelines for Patients (English and Spanish)

Ovarian Cancer Treatment Guidelines for Patients (English and Spanish)

Prostate Cancer Treatment Guidelines for Patients (English and Spanish)

Terri Ades, MS, APRN-BCAmerican Cancer Society

Patricia Yeargin, MN, MPH, RNAmerican Cancer Society

Elizabeth Brown, MDNational Comprehensive Cancer Network

Rashmi Kumar, PhDNational Comprehensive Cancer Network

Mary Dwyer Rosario, MSNational Comprehensive Cancer Network

Dorothy A. Shead, MSNational Comprehensive Cancer Network

Michael H. Levy, MD, PhD/ChairFox Chase Cancer Center

The Advanced Cancer and Palliative Care Treatment Guidelines for Patients were developed by adiverse group of experts and were based on the NCCN clinical practice guidelines. These patientguidelines were translated, reviewed, and published with help from the following individuals.

The original NCCN Advanced Cancer and Palliative Care Guidelines were developed by the following NCCN Panel Members.

Michael H. Levy, MD, PhD/ChairFox Chase Cancer Center

Anthony Back, MDFred Hutchinson Cancer ResearchCenter/Seattle Cancer Care Alliance

Sadaf Bazargan, MDH. Lee Moffitt Cancer Center &Research Institute

Costantino Benedetti, MDArthur G. James Cancer Hospital &Richard J. Solove Research Instituteat The Ohio State University

J. Andrew Billings, MDDana-Farber/Brigham and Women’sCancer Center | MassachusettsGeneral Hospital Cancer Center

Susan Block, MDDana-Farber/Brigham and Women’sCancer Center | MassachusettsGeneral Hospital Cancer Center

Eduardo Bruera, MDThe University of Texas M. D.Anderson Cancer Center

Sydney Dy, MDThe Sidney Kimmel ComprehensiveCancer Center at Johns Hopkins

Catherine Eberle, MDUNMC Eppley Cancer Center at The Nebraska Medical Center

Kathleen M. Foley, MDMemorial Sloan-Kettering Cancer Center

Juan-Diego Harris, MDRoswell Park Cancer Institute

Sara J. Knight, PhDUCSF Helen Diller FamilyComprehensive Cancer Center

Andrew Liman, MDSt. Jude Children`s ResearchHospital/University of TennesseeCancer Institute

Robert Milch, MDThe Center for Hospice andPalliative Care

Michelle Rhiner, RN, NPCity of Hope

Neal E. Slatkin, MDCity of Hope

David Spiegel, MDStanford Comprehensive Cancer Center

Linda Sutton, MDDuke Comprehensive Cancer Center

Susan Urba, MDUniversity of MichiganComprehensive Cancer Center

Jamie H. Von Roenn, MDRobert H. Lurie ComprehensiveCancer Center of NorthwesternUniversity

Sharon M. Weinstein, MDHuntsman Cancer Institute at the University of Utah

advanced cancer and palliative...

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