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M Improving Palliative Care We can take better care of people with cancer.

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What is palliative care? Palliative care is the active total care of the body, mind, and spirit. It involves giving support to the entire family. The purpose of palliative care is to prevent or lessen the severity of pain and other symptoms and to achieve the best quality of life for people dying or suffering from a long-term disease. It means treating them as whole persons, not just as people "Even the simple with medical problems. Palliative care acknowledges that things mean a lot. people with cancer may need help to: Take care of their pain. My nurses help me Meet their emotional needs. keep as comfortable Get the support they and their families may need. Work through spiritual issues. as I can People who have cancer may benefit from palliative care possibly be." from the time they are told they have cancer, throughout treatment, and especially near the end of life. Nadine, 82 Palliative Care: Palliative care means making sure a person has what he or she needs to be as comfortable as possible throughout the course of illness. It may mean: Giving medicines for pain, anxiety, and constipation. Treating tumors with radiation to make it easier to breathe and swallow. Helping people get the emotional support they and their families need. End-of-Life Care: End-of-life care means meeting the needs of people as they near death. When a person is dying, different kinds of needs may become important. For example, the person may need help working through closure with family members or planning for death. Hospice: Hospice is a program that delivers palliative care to people who are dying and need treatment to prevent or manage pain and other symptoms, even when cure is no longer possible.

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We can take better care of people with cancer. As a society, we have made amazing gains in being able to detect and treat cancer. Even so, about half the people who are told by their doctors that they have cancer will die within a few years. This means that every year about one million people find out that they have cancer and are treated, and "When my doctor about one-half million people die of cancer nationwide. first told me I had So far, most cancer research and treatment has focused on trying to cure cancer. There hasn't been much attention paid cancer, I was to other important issues, such as pain control and taking overwhelmed. There care of other troubling symptoms. Now more and more people are aware that there are cancer care needs beyond was so much I needed just trying to cure it. to know. There were Attention is now being paid to helping people with cancer so many decisions I cope better with the problems that may arise when people are being treated or as they approach death. had to make. I didnt' Palliative care should ensure that people: know how to cope." Keep the best quality of life they can have, for as long as they can. Shirley, 68 Have the freedom to choose what treatments they want. Get treated to prevent pain and other symptoms, or to control them as best as can be done.

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People with cancer have many symptoms. Some symptoms are from the cancer itself. Other problems may be caused by treatments they take to fight the cancer. This is true for those who are cured of their cancer and for "Watching my those who are not. For those who aren't cured, these symptoms usually grow worse in the months and weeks moms' condition before they die. deteriorate was People with cancer may: hard on all of us. Feel pain. Have a hard time breathing. It helped to know Feel nausea. that we could help Feel anxious, worried, or confused. People with cancer should be able to get care for these and her keep a sense of other problems. They and their families should have support dignity. We were to get through the difficult times they may face. able to help her do Treating symptoms and lessening the burdens on families allows patients to: what she needed to Keep a sense of control. do before she died." Relieve old conflicts in their lives. Strengthen ties with their loved ones. Susan, 52, Deal with spiritual matters. daughter of Joyce, 77

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Why don't people get the care they need? For many people there are barriers that stand in the way of getting palliative care when they need it. Palliative or hospice care is often separated from hospital care. It may not be paid for in the same way as hospital care. Health care providers are often not trained in ways to "I knew the care give palliative care or in how to take care of the my dad was getting symptoms of people with cancer. Good standards of care for people with cancer, wasnt' dealing with especially those dying of cancer, have not yet been what he really adopted nationwide. It may be especially difficult for African-Americans needed. I didnt' and people from other underserved communities to know where to go get the care they need. People don't know where to get the information they for advice." need about comfort and end-of-life care. There is little funding for research to find better ways Tom, 36, of relieving the symptoms of cancer and its treatment son of Tom, Sr., 65 at the end of life. There is little funding to train health care providers to give that kind of care.

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Palliative care should not be separated from medical treatment. Palliative care can improve the lives of people with cancer and their families. It is important to give palliative care along with other medical treatment. At this point, people in the United States can get either medical care to treat their cancer or palliative care, but often not both. Even when people can get comfort care for their symptoms, there may "Getting my aunt not be much attention paid to their emotional, family, or the hospice care she spiritual needs. Individuals from low-income families or from various ethnic groups are even less likely to get the needed was such care they need. a struggle. It Many people who are dying are able to get hospice services shouldnt' have to based on palliative care ideals. Hospice patients can benefit from having: be like this." A team who works together to plan their care. Veronica, 25, A nurse who cares for their medical needs. niece of Maria, 43 A counselor who supports patients and their families. An educator who teaches families what they need to know. A chaplain who helps guide them through difficult times. Hospice patients can also get needed medicines, medical equipment, and supplies. Hospice services are covered by most private insurance and by Medicaid (in most states) and by Medicare. Because cancer often strikes older people, Medicare usually pays for it. The Medicare hospice benefit covers pain medication and other medicines needed. However, Medicare allows patients to enroll for hospice services only if they are expected to live less than six months. In addition, patients can't get hospice services if they also want to try to fight the cancer to survive. People are often not willing to give up on treatment until they are very close to death. More than half of all cancer patients who are dying have used some hospice services. But people often wait until the very last days to sign up for hospice services. Some doctors

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or families may try to shield patients from the realities they are facing. The strict rules of Medicare also add to the "At the beginning problem. Because of these and other reasons, people who of Jasons' hospice are dying don't get the full benefit of having palliative care in the final months and days of their lives. care, his pain was And of course, not everyone with cancer has Medicare. For easily controlled by example, parents of children with cancer often have a hard low-dose IV time finding and paying for good hospice care. Many health insurance plans do not pay for some hospice services, like morphine. As the the counseling or other kinds of help families need. days went on, the Special needs of children with cancer: pain worsened. Children with cancer have special needs that must be When the pain hit, addressed. They cannot be treated as "small adults." it would take us over Children with cancer and their families need palliative care, hospice, and end-of-life care. Much an hour of him of this care consists of frequent counseling sessions so screaming to get that the child and the family can fully understand the child's condition and what choices are available. it under control. Doctors and other caregivers must be able to counsel Knowledge of how the parents alone, as well as the child and brothers and sisters. This kind of care should be paid for by to manage pain health insurance, just like chemotherapy. But more in children is often than not, there is little or no payment for these important discussions. desperately lacking." Research also needs to be done. For example: Angela, 34, When a child is so ill that he or she may die, mother of Jason, 7 parents need information to help them prepare and to help them make good decisions. Research is needed to find out when it would be best to offer this information. Children with cancer may have severe pain. Research needs to be done to figure out what treatments work best for children.

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Health care providers need better training in palliative care. If we want to improve the way we deliver palliative care, we need to improve how we train our care providers. The information we now have about palliative care and its importance is fairly new and needs to be incorporated into "I was grateful to training programs. Doctors and other health care providers need to be trained to manage pain and other symptoms. have had the chance They need to learn how to care for people living with and to take course work dying from cancer as well as when and how to refer them to the care they need. The experiences of patients in pain and in palliative care. dying need to be incorporated into medical education. It has made me much More textbooks and courses need to be developed on the subject of palliative care. more sensitive to the The truth is that most new health care providers leave their needs of the dying training programs with little or no experience in caring for and their families." dying patients. In many cases, these new doctors and nurses may have had only a few lectures on the subject. A few schools do have full-length courses on comfort and end-of- Marcus, 32, oncologist life care. Students can decide whether or not they want to attend them, but many do not because it is not required. Most do not get the training and experience they need. Here is what is needed: More health care providers are needed who understand palliative care. Textbooks, other written materials, and courses on palliative care need to be developed. Training programs need to be coordinated for the many kinds of professionals who care for dying patients. Palliative care experts should guide decisions about what doctors need to learn in residency programs. Questions about palliative care should be added to licensing and certifying exams.

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Standards for palliative care need to be adopted and widely used. Health care providers, hospitals, and health plans need to "We are looking plan how they will give palliative care to people with to institute an cancer. People with cancer should be able to expect that: They will be able to help make decisions about evaluation system their care. and are Their symptoms will be managed well and their pain will be well controlled. beginning to They will be able to build trust and rapport with track what people their health care providers. They will be satisfied with their care most of the time. really think about All the providers giving care will coordinate their care. We their services. hope to be able to make important and needed changes in the way we deliver care." Rosana, 44, nurse

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All people need better access to palliative care. It is important that all people have access to palliative care. The need is great in many underserved communities, yet palliative care is often not available. For example, African- Americans have a higher rate of certain cancers and of death "My mother had a from cancer than do whites. Yet African-Americans use painful bone cancer. hospice care less often than other groups. African-Americans and other ethnic communities have a long history of unequal I couldnt' buy her treatment in our health care system. There may be no prescribed painkiller hospice care available in low-income, inner-city, or rural areas. Many drug stores in these areas do not stock strong at my local drug pain medications. store. It took me There is a huge need for palliative care in ethnic hours on the bus to communities. Another issue is that people from various cultures have differing beliefs and traditions regarding care of get what she needed." the dying. Doctors and nurses need to give care that respects these customs. As a society, we need to: Bernadette, 45, daughter of Train people to give respectful care. Wilhelmina, 66 Research the needs of underserved ethnic groups when it comes to end-of-life care. Find ways to make sure all people get the care they need.

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People need help in finding out about palliative care and end-of-life care. When people find out they have cancer, they often look for information about what caused their cancer, what treatment choices they have and what is going on in research. People "I didnt' know can get this information from many places: where to get the Health professionals Family and friends information I Cancer support groups needed to make Religious leaders Printed materials good choices for Telephone hotlines my care. It was The Internet Most materials focus on curing cancer and living as a really hard to survivor. There needs to be more information provided understand what about palliative and end-of-life care. Booklets and other written materials must describe palliative care and the last my options were. stages of cancer, as well as treatment and prevention. I really needed it These materials must also be written at appropriate reading levels and in the languages that people feel most broken down comfortable reading. for me." People rely on their health care providers for information about end-of-life care. But everyone, health care providers Jesse, 62 included, finds it hard to talk about death and dying. Health care providers must be trained and given the experience they need to sensitively talk about end-of-life care--and to listen to patients and families, in turn. Both health care providers and families need help in finding acceptable ways to talk about end-of-life care.

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There needs to be more funding for palliative care research and training. Billions of dollars are spent in understanding why cancer happens and in finding cures and treatments. But little money has been put into research to help take care of the "We need to fund physical and emotional pain--and other symptoms--that more research in people have living with and dying from cancer. This research would greatly benefit people who suffer from palliative care cancer. But it would also benefit everyone who has any options. We need serious illness or is dying. The cancer research community can lead the way. to make training in The medical community now has new ways to understand palliative care a the symptoms people experience. For example, now we can priority for our take images of the brain. This can help us study pain and depression. We can see how treatment helps. Many more health care new treatments could be developed. These treatments could providers." give us better control of most of the symptoms people with cancer have. To do this, the government must give the Joseph, 42, professor needed funding. Among many other issues, we need to advocate for more research in: How to communicate better with patients who are dying, as well as with their families. New ways to control the symptoms of the late stages of cancer and the side effects of cancer treatments. How to deal with the emotional, social, and financial issues facing families. In addition, more dollars need to be spent developing and providing the education and training programs health care providers need in order to give good palliative care to all their patients.

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There is hope. Palliative care is starting to get the attention it needs. Some new projects are testing innovative ways to give and pay for palliative care all the way through the course of an illness. People are coming up with good ideas that may work very well. "Palliative care Together we can break down the barriers to getting has made such a excellent palliative and end-of-life care to the people who need it. We can find new ways of managing the issues that difference in the people with cancer and their families must face. We can day-to-day stuff I make things better for people with cancer today and for those who may face it in the future. We can find better have to deal with. ways to help patients newly diagnosed with cancer, those It makes things dealing with treatment and recovery, as well as those coping with end-of-life issues. bearable." After studying the state of palliative care in the United States, the National Cancer Policy Board developed Fred, 72 recommendations to improve the system. On the next few pages we summarize their recommendations to doctors, the government, and others who can influence the quality of palliative care.

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1. Create Centers of Excellence in palliative care. Around our country, the National Cancer Institute (NCI) should name certain cancer centers as Centers of Excellence in palliative care. These centers will: Give the best palliative care possible. Carry out research in palliative care. They could test "Having a cancer new and current care guidelines and create new guidelines that may work better. center nearby-- Train health care providers in their region. where theyve made ' Here are examples of other things these centers could do: palliative care a Make sure that caregivers in nearby hospitals learn about better ways to treat patients and their symptoms. priority--has really Find ways to make it easier for all people to get helped me in my palliative care. This may mean setting up outreach programs or training providers in diverse practice. I know I neighborhoods. can call them for Give fellowships in palliative and end-of-life care for cancer to health care providers and researchers. the latest about Keep local hospice staff up to date on new ways to treating my give palliative care and to control pain and other symptoms. patients' symptoms." Project ENABLE: Educate, Nurture, Advise, Before Aaron, 49, M.D. Life Ends is a good example of how a Center of Excellence might work. The Dartmouth-Hitchcock Medical Center's Project ENABLE team has moved high- quality end-of-life care into three rural communities in New Hampshire. The ENABLE team makes sure patients get proper palliative care throughout their illness. Teaching the patient is a big part of the program. Cancer patients and their families are encouraged to learn how to find the care they need, plan ahead, and keep control of their lives and important choices. The project has shown that "patients need not be abandoned when a cure no longer seems possible."

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2. Fund special projects to show how services could and should be given. The government should fund projects to help develop new ways to pay for and give palliative care. Each symptom faced by cancer patients needs more research. Here are examples of just a few of the many needed research areas. We need to: Find out why so many patients have pain, even "Were working to ' though current pain medications are excellent. get new legislation Find more new treatments for pain. Test products to improve appetite. in our state to Find new ways to cope with fatigue. make it possible for 3. Pay for the true costs of palliative and insurance to cover end-of-life care. palliative care. I It takes time to work with dying persons and their families. know its' going to This is especially true of dying children and their parents. There is a need to spend time talking through everything help make a big that is going on with the family. Health care team improvement in members must talk with each other often. A doctor may get paid about the same for a long, difficult visit like this as the kind of care for seeing a child with a sore throat. Insurers should make families get." sure they pay fairly for this special type of care and the time it takes to provide it. Rebecca, 42, activist

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4. Give people the information they need about palliative and end-of-life care. Health care providers and groups providing information about cancer prevention and treatment should also provide information about palliative and end-of-life care. People should have information about palliative care all through the "The health care course of their disease. People also need to know what to educator walked me expect at the end of life. through my choices All written materials should: Be written in plain language so they can be and explained easily understood. everything really Meet the needs and values of the people who will read them. well. It was Booklets and other kinds of written materials should be important to me made especially for: Children with cancer and their families. that my family People of different ethnic backgrounds and beliefs. knew what Other ways of getting information to people, such as videos, awareness campaigns, or television programs need to to expect." be created. Hana, 62 5. Create standards of care to help health care providers deal with pain and the other problems people with cancer face. The health care profession is responsible for creating standards of care that spell out what good palliative care means. Professional societies that represent doctors, nurses, and social workers in cancer care should work together to create, test, and use the best possible practices in the care they provide to people with cancer throughout their treatment and at the end of life.

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6. Make sure that palliative care and end-of-life care improves. We need to: Develop a standard way to measure the quality of palliative care and end-of-life care. Support research and projects that show how to give excellent palliative and end-of-life care. "My family was brought closer We can make a difference! together through Cancer is something that affects us all. We shouldn't let this crisis. The another day pass in which cancer patients suffer needlessly. The tragedy is that we know how to provide palliative care loving, respectful and relieve much of the pain people endure. Now is the care we got really time for change. All of us must work together. Our doctors and nurses, our insurers, and our government officials need made a difference to work together to give cancer patients the best care to all of us." possible. We must all advocate for good palliative care. Each of us can work to make a difference. Together, we can Chris, 53 create a caring, respectful healthcare system that people can trust to serve them and their loved ones as they go through the crisis of cancer.

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About this booklet and the National Cancer Policy Board: This booklet is based on a report called Improving Palliative Care for Cancer put out by the National Cancer Policy Board (NCPB). The board is made up of medical professionals who are national experts in the treatment of cancer and in cancer research, as well as individuals representing the public. The NCPB is a joint effort of the Institute of Medicine and the National Research Council of the National Academies. When the Board began to study palliative care, it asked for input from experts all around the United States. These experts wrote chapters on subjects ranging from the costs of palliative care, to the way doctors, nurses, and social workers learn about palliative care when they are in training. The chapters described the current state of the art in palliative care and identified opportunities for improvement. The NCPB used this information to identify problems, chances to do better, and the steps that the government and others could take to improve palliative care for people with cancer. This booklet shares with the public what the NCPB learned about the state of the art in palliative care and what it recommended to the policymakers. The premise of the booklet is that the more everyone understands about the problems and possible solutions, the more effective we can all be in making the health care system better for people with cancer and the families who love them. To purchase or review a copy of the original report, Improving Palliative Care for Cancer, visit the National Academies Press website at www.nap.edu. This book- let is also available at that website.

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Background Paper Authors National Cancer Policy Board This summary and the recommendations presented Arnold J. Levine, Ph.D., (Chair), President, The in this report are based on the work of the experts Rockefeller University, New York listed below: Joseph Simone, M.D., (Vice Chair), Medical Lisa Chertkov, M.D., Memorial Sloan-Kettering Director, Huntsman Cancer Foundation and Cancer Center, New York Institute, University of Utah, Salt Lake City Charles S. Cleeland, Ph.D., University of Texas Ellen Stovall (Vice Chair), Executive Director, M.D. Anderson Cancer Center, Houston National Coalition for Cancer Survivorship, Silver David R. Freyer, D.O., DeVos Children's Hospital, Spring, MD Grand Rapids Diana Petitti (Vice Chair), M.D., M.P.H., Director, Sarah Friebert, M.D., Case Western Reserve Research and Evaluation, Kaiser Permanente of University, St. Vincent's Mercy Children's Hospital, Southern California, Pasadena Hospice of the Western Reserve, Chicago Tim Byers, M.D., M.P.H., Professor of Epidemiology Joanne M. Hilden, M.D., The Cleveland Clinic and Program Leader, Clinical Cancer Prevention Foundation, Cleveland and Control, University of Colorado Bruce P. Himelstein, M.D., University of Health Sciences Center, Denver Pennsylvania School of Medicine, Children's Vivien W. Chen, Ph.D., Epidemiology Section Chief Hospital of Philadelphia and Professor, Louisiana State University Medical Jimmie C. Holland, M.D., Memorial Center, New Orleans Sloan-Kettering Cancer Center, New York Susan Curry, Ph.D., Director, Center for Health Javier R. Kane, M.D., University of Texas Health Studies, Group Health Cooperative of Puget Sound, Science Center, Christus Santa Rosa Children's Seattle Hospital, Christus Santa Rosa Hospice, San Antonio Norman Daniels, Ph.D., Professor of Philosophy, Aaron S. Kesselheim, M.D., University of Pennsyl- Tufts University, Boston (through April 2001) vania Kathleen Foley, M.D., Director, Project on Death in Joanne Lynn, M.D., RAND Center to Improve Care America, The Open Society and Memorial Sloan- of the Dying, Washington, D.C. Kettering Cancer Center, New York (through April Ann O'Mara, R.N., Ph.D., Bethesda, MD 2001) Richard Payne, M.D., Memorial Sloan-Kettering Thomas Kelly, M.D., Ph.D., Professor and Cancer Center, New York Chairman, Department of Molecular Biology and Joan M. Teno, M.D., M.S., Brown University School Genetics, The Johns Hopkins University School of of Medicine and Department of Community Health, Medicine, Baltimore (through April 2001) Providence Mark McClellan, M.D., Ph.D., Assistant Professor of Economics, Stanford University (through March Study Staff 2001) William McGuire, M.D., Chief Executive Officer, Hellen Gelband, Study Director United Health Group, Minnetonka, MN Florence Poillon, Editor John Mendelsohn, M.D., President, University of Texas M.D. Anderson Cancer Center, Houston NCPB Staff Monica Morrow, M.D., Professor of Surgery and Robert Cook-Deegan, Director, National Cancer Director, Lynn Sage Comprehensive Breast Program, Policy Board (through August 2000) Northwestern University Medical School, Chicago Roger Herdman, Director, National Cancer Policy Nancy Mueller, Sc.D., Professor of Epidemiology, Board (from September 2000) Harvard University School of Public Health, Boston Ellen Johnson, Administrator (through July 2000) Pilar Ossorio, Ph.D., J.D., Assistant Professor of Law Nicci T. Dowd, Administrator (from August 2000) and Medical Ethics, and Associate Director for Jennifer Cangco, Financial Associate Programming, Center for the Study of Race and Ethnicity in Medicine, University of Wisconsin Law School, Madison Editing, Design, and Translation Cecil B. Pickett, Ph.D., Executive Vice President for California Family Health Council, Inc. Discovery Research, Schering-Plough Research Donna Bell Sanders, MPH, editor Institute, Kenilworth, NJ Sue Ellen Parkinson, design John Seffrin, Ph.D., Chief Executive Officer, Ildiko Tenyi, Spanish-language adaptation American Cancer Society, Atlanta Sandra Millon Underwood, R.N., Ph.D., ACS Funding Oncology Nursing Professor, University of Wisconsin School of Nursing, Milwaukee This edition was funded by the Frances Visco, President, National Breast Cancer Robert Wood Johnson Foundation. Coalition, Washington, D.C. (through April 2001) Susan Weiner, Ph.D., President, The Children's Cause, Silver Spring, MD

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We can make a difference. We can make sure that people with cancer get the help and support they need to: Take care of pain and other symptoms. Meet their emotional needs. Work through spiritual and physical distress. Keep the best quality of life they can have for as long as they can. Strengthen ties with their loved ones. This is what palliative care is all about. We can improve palliative care for people with cancer. We can work together to help people get the care they need. Copyright 2003 by the National Academy of Sciences. All rights reserved. Printed in the United States.