When Someone You Love Has Advanced Cancer (PDF)

Support for Caregivers When Someone You Love Has Advanced Cancer National Cancer Institute U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health  For more information… The following free booklets may be helpful if your loved one has cancer treatment: • Chemotherapy and You • Coping With Advanced Cancer • Eating Hints for Cancer Patients • Taking Part in Cancer Treatment Research Studies • Pain Control • Radiation Therapy and You • Taking Time • Thinking About Complementary and Alternative Medicine • When Cancer Returns These booklets are available online from the National Cancer Institute (NCI). To learn more about specific types of cancer or to request any of these booklets, visit NCI’s website (http://www.cancer.gov). You can also call NCI’s Cancer Information Service toll-free at 1-800-4-CANCER (1-800-422-6237) to speak with an information specialist. We would like to offer our sincerest gratitude to the extraordinary caregivers, health professionals, and scientists who contributed to the development and review of this publication.  When Someone You Love Has Advanced Cancer “If there’s one thing that’s come out of taking care of someone, it’s that I’ve learned what’s important really fast. And it’s a lesson I’ll carry forever.” —Maureen  The purpose of this book is to focus on you and your needs. We’ve heard from many caregivers about things they wish they had known early on. We have collected their tips in this booklet. Some of the tips seem simple, but they may not always be easy to do. Use this booklet in whatever way works best for you. You can read it from front to back. Or you can just refer to different sections as you need them. No two people are alike. Some chapters of this booklet may apply to you, while others may not. Or you may find that some sections are more useful to you later. Or you may decide that you would rather read a different booklet right now (see below). Terms Used: This booklet uses the terms “loved one” and “patient” throughout to describe the person you are caring for. In addition, for ease of reading, we alternate using the pronouns “he” and “she” when referring to the person with cancer. Other booklets for caregivers that can be printed from the NCI website are: ■ Facing Forward: When Someone You Love Has Completed Cancer Treatment ■ When Someone You Love Is Being Treated for Cancer ■ Children with Cancer: A Guide for Parents ■ When Your Parent Has Cancer: A Guide For Teens ■ When Your Brother or Sister Has Cancer: A Guide for Teens  Table of Contents Overview ........................................................................................1 Helping Your Loved One Cope With Advanced Cancer ...............2 Working With the Health Care Team ...........................................9 Getting Support ...........................................................................13 Life Planning ................................................................................17 Talking with Family and Friends .................................................21 Caring for Yourself .......................................................................33 Reflection .....................................................................................46 Caregiver’s Bill of Rights .............................................................47 Personal Affairs Worksheet ..........................................................48 Signs That Death Is Near and What You Can Do .......................52 Resources ......................................................................................53   1 Overview Is This Booklet for Me? This booklet is for you if your loved one has been told that he or she has advanced cancer that is no longer responding to treatment. It explores many of the questions and crossroads you may be facing now. Until now, you have probably gone through cancer treatment with your loved one hoping for a remission or recovery. If your health care team is telling you that this may not be possible, you may be facing new choices to make about care and future steps. Making these transitions in care can be hard. You’ll need to focus on the things you can control and what you can do to make this time with your loved one special. You’ll want to help the patient live life to the fullest. Many caregivers say that this time gave their life special meaning and a sense of what’s important. There are other booklets available that talk about how to give care to a loved one. But the purpose of this booklet is to focus on you and your needs. Who Is a Caregiver? If you are helping someone you love during cancer care, you are a “caregiver.” You may not think of yourself as a caregiver. You may look at what you’re doing as something natural—taking care of someone you love. There are different types of caregivers. Some are family members. Others are friends. Every situation is different. So there are different ways to give care. There isn’t one way that works best. Caregiving can mean helping with day-to-day activities such as doctor visits or preparing food. But it can also happen long-distance, when you are coordinating care and services by phone or email. Caregiving can also mean giving emotional and spiritual support. You may be helping your loved one cope and work through the many feelings that come up at this time. Talking, listening, and just being there are some of the most important things you can do. During this time, the natural r esponse of most caregivers is to put their own feelings and needs aside. They try to focus on the person with cancer and the many tasks of caregiving. This may be fine for a little while. But it can be hard to keep up for a long time. And it’s not good for your health. If you don’t take care of yourself, you won’t be able to take care of others. It’s important for everyone that you take care of you.  2 Helping Your Loved One Cope With Advanced Cancer Your loved one may be struggling with advanced cancer or with a cancer recurrence. Doctors may be saying that the cancer isn’t responding to treatment. You may have been told that long-term remission isn’t likely. Or your loved one may have decided to discontinue treatment and live out his or her days to the fullest. This may be a time when new decisions need to be made. Shifts in care may be needed or may already be taking place. The burden of making these decisions together may seem much heavier than it used to be. These choices often come with many emotions, such as sadness, anger, and the fear of the unknown. They may also come with questions about how much longer your loved one will live. Thinking or talking about these issues may feel like you’re giving up. But you aren’t. It doesn’t mean giving up hope. People usually cope better when they have different options. Having information about how to deal with tough situations will help. Your loved one still deserves good medical care and support from the health care team even if the treatment changes. “When you’re taking care of somebody, you’re so busy. For me, staying busy was very fulfilling. But then, when it began to shift, I felt empty sometimes, wondering what to do next.” —Joe Making Decisions Together You may have been caring for the cancer patient for a short or a long time. Most likely, you’ll be very involved in helping make choices about next steps for care. Some of these choices may include: ■ Treatment goals ■ When to use hospice care ■ Financial decisions ■ How to get support from family members “I guess some people don’t want a lot of information because they aren’t sure they can handle what the possibilities are. But I don’t think you can really make a good decision without knowing everything. We had to ask a lot of questions, though, because we didn’t know all our options.” —Beth  3 When dealing with advanced cancer, people have different goals for their care. Some want to keep following more aggressive treatments. Others decide to choose other paths for care. You may wonder: “Have we done everything possible to treat the cancer, or should we try another treatment?” It’s natural to want to do all you can, but you should weigh these feelings against the positives and negatives for your loved one. “You really want to know if the treatment is worse than the illness. We’ve come to ask the question, what’s the quality of life after this? Is it worth being sick for 2 months if he’s got less than a year to live?” —Dan Questions to ask: ■ What’s the best we can hope for by trying another treatment? ■ Is this treatment meant to ease side effects or slow the spread of cancer? ■ Is there a chance that a new treatment will be found while we try the old one? ■ What are the possible side effects and other downsides of the treatment? How likely are they? ■ Are the possible rewards bigger than the possible drawbacks? Asking these questions may help the patient decide whether to continue or begin more treatment. It’s best to work together on this process. It will help you figure out both of your needs and the needs of others close to you. It’s important to ask your health care team what to expect in the future. And it’s also important to be clear with them about how much information you and the patient want from them.  4 Understanding Your Loved One’s Wishes For many families, it’s important that your loved one be in charge of making decisions. But in some families and cultures, it’s common for the caregiver to make many of the decisions. And they may make them with or without the patient knowing. Or sometimes the patient wants the caregiver to make all the decisions. This may be hard, for many reasons: ■ Your own stress may make it hard to decide. ■ Your ideas about how to move forward may differ from the ideas of other family members or friends. ■ The patient may have different beliefs about care than you or other loved ones. ■ The opinions of your health care team may differ from your loved one’s or yours. There may also come a time when you have to make decisions for your loved one because he can’t anymore. It’s important to get a sense of how he feels about this before it happens. How would he like to deal with it? This may mean letting go of some opinions that you have about treatment. (For example, you may want to keep your loved one alive, whatever it takes. But he may wish to stop receiving life-sustaining measures at a certain point.) Try to keep things in perspective by looking at the facts. “I think some people, like me, want to know everything. I want no surprises. But my husband doesn’t want to know anything. We struggle with how to handle this issue.” —Dora  5 Palliative Care All patients have a right to comfort and quality of life throughout their care. Care that makes patients feel better, but doesn’t treat the disease itself is often called palliative care. It includes treating or preventing cancer symptoms and side effects caused by treatment. Comfort care can also mean getting help with emotional and spiritual problems during and after cancer treatment. People once thought of palliative care as a way to comfort those dying of cancer. Doctors now offer this care to all cancer patients, beginning when the cancer is diagnosed. Palliative care can go on through treatment, survival, advanced disease, and the time when treatment no longer controls the cancer. Members of the health care team may be able to provide comfort care. But a palliative care specialist may be the best person to treat some problems. Ask the doctor or nurse if there is a specialist your loved one can see. Sometimes patients only want to focus on the cancer itself. Yet they can improve their quality of life with palliative care. Choices for Care There are a number of options for your loved one’s cancer care. These depend on the type of cancer and the patient’s goals for care. These options include: ■ Clinical trials (research studies) ■ Palliative radiation, chemotherapy, or surgery ■ Hospice care ■ Home care Many patients choose more than one option. Your loved one should base her decision on the risks and benefits of available treatments as well as her own feelings about life and death. You should both ask all the questions you need to. If she chooses not to get any more active cancer treatment, it does not necessarily mean a quick decline and death. And she will continue to receive palliative care and made comfortable. The health care team can offer information and advice on treatment options. “We have to let patients and their family members truly understand that if they choose not to do chemo or some other aggressive therapy, there are other options where they will receive support, comfort care, and assistance from the health care team.” —Dr. Hauser  6 Clinical Trials Patients with advanced cancer may be offered the option to participate in early-phase clinical trials. These trials are designed to look at the safety of a new treatment and to identify the best dose. The chance that the new treatment will benefit a patient in such a trial is low, but some patients join these trials because they have hope that the treatment may help slow the growth of their cancer. Another reason may be that they want to benefit future patients by taking part in a trial. Clinical trials have both benefits and risks. Your doctor and the study doctors should fully explain these before you decide to join a trial. Palliative Treatment Many of the same methods that are used to treat cancer, such as medicines and certain treatments, can also be used to reduce pain or other symptoms, and help a patient feel more comfortable. In advanced cancer, palliative treatment may be given to help a person feel better, even if it isn’t intended to treat the cancer. For example, doctors may give chemotherapy to slow the growth of a tumor that is causing pain. Or surgery may be performed to remove a mass that is pressing on certain nerves and causing pain.  7 Hospice Care Choosing hospice care doesn’t mean that you’ve given up. It means that the treatment goals are different now. It does not mean giving up hope, but rather changing what you hope for. The goal of hospice is to help patients live each day to the fullest by making them as comfortable and as symptom-free as possible. Hospice doctors, nurses, chaplains, social workers, and volunteers are specially trained. They are dedicated to supporting the emotional, social, and spiritual needs of both patients and their families, as well as dealing with patients’ medical symptoms. “I can’t say enough about our hospice nurse. We don’t need her all the time yet, but she’s here if we need help. She comes by or calls us to see if there’s anything she can do. She’s been a great source of comfort these past few months.” —Gail Many people believe that hospice is only available in the last days or weeks of life. They don’t realize that hospice can provide support for much more than a few weeks. As a result, many caregivers have said that they wished they had gotten hospice involved sooner in the care process. They were surprised by the expert care and understanding that they got. Often, control of symptoms not only improves quality of life but also helps people live longer. Check with the hospice you are thinking of using to learn what treatments and services are covered. Also check with your loved one’s insurance company to see what it will cover. People usually qualify for hospice services when their doctor signs a statement that says that patients with their type and stage of disease, on average, aren’t likely to survive beyond 6 months. Patients will be reviewed periodically by the health care team to see whether hospice care is still right for them. Services may include: ■ Doctor services ■ Nursing care ■ Medical supplies and equipment ■ Drugs for managing cancer-related symptoms and pain ■ Short-term inpatient care ■ Homemaker and home health aide services ■ Respite services to give you a break from caring for your loved one ■ Counseling ■ Social work services ■ Spiritual care ■ Bereavement (grief) counseling and support ■ Volunteer services  8 No One Knows the Future It’s normal for people to want to know how long their loved one will have to live. It’s also natural to want to prepare for what lies ahead. You may want to prepare emotionally too, as well as make certain arrangements and plans. But predicting how long someone will live is difficult. The doctor has to take into account the type of cancer, treatment, past illnesses, and other factors. Your loved one’s doctor may be able to give you an estimate. But keep in mind that it’s a guess. Every patient is different. Some patients live long past the time the doctor first predicted. Others live a shorter time. Also, an infection or other complication could happen and change things. Your loved one’s doctor may know the situation best. But even the doctor can’t know the answer for sure. And doctors don’t always feel comfortable trying to predict how long someone will live. In truth, none of us knows when we are going to die. Unexpected events happen every day. The best we can do is try to live fully and for today. What to Expect with Hospice Care People can get hospice services at home, in special facilities, in hospitals, and in nursing homes. Hospice care also provides visits by nursing assistants, social workers, and chaplains, as well as nurses on call 24 hours a day in case you need advice. And they have many volunteers who help families care for their loved one. Some hospice services will give palliative chemotherapy at home as well. Hospice care doesn’t seek to treat cancer. But it does treat curable problems with brief hospital stays if needed. Examples might be pneumonia or a bladder infection. “I wish I’d found out earlier about hospice care. But you don’t know what you need at the beginning. And I didn’t realize they could help me sooner, rather than later.” —Bruce Medicare, Medicaid, and most private insurance companies cover hospice services. For those without coverage and in financial need, many hospices provide care for free. To learn more about hospice care, call the National Hospice and Palliative Care Organization at 1-800-658-8898. Or visit the website at http://www.nhpco.org to find a hospice program in your community. Home Care Home care services not only provide palliative care, but may treat the cancer itself. This is for people who get medical care at home rather than in a hospital. If the patient qualifies for home care services, they may include: ■ Managing symptoms ■ Monitoring care ■ Physical and other therapies ■ Providing medical equipment Your loved one may have to pay for home care services. Check with your insurance company. Medicare, Medicaid, and private insurance companies will sometimes cover home care services when ordered by the doctor. But some rules apply. So talk to a social worker and other members of the health care team to find out more about home care.  9 Working With the Health Care Team Your situation may be changing a lot now. It’s very important to keep asking questions. Some caregivers feel that they were given a lot of information early on, but not as much later. And learning all the unknowns of the different care and treatment options can be stressful. It’s important for you and your loved one to sit down with the health care team. You need to talk about future steps and what to expect. You may be afraid of what you might hear. But other caregivers have said that they felt reassured after learning their options. It made them able to plan ahead. Some people with cancer want to know everything. Others let their caregivers make the decisions. Sometimes these differences are cultural. Other times they are personal. The patient, your family, and you should decide who will be the primary contact for the health care team. Asking About Pain People who have their pain managed are able to focus on enjoying life. Caregivers often worry about their loved one being in pain. If they are preoccupied by pain, you may notice changes in their personality, such as being distant, not being able to sleep, or not being able to focus on daily activities they once enjoyed. Your loved one does not have to be in pain or in any discomfort. Some people assume that there will always be severe pain with cancer. This is not true. Pain can be managed throughout treatment. The key is to talk regularly with the health care team about pain and other symptoms. You may want to ask if there is a pain specialist on staff as well. Sometimes people with cancer don’t want to talk to the health care team about their pain. They worry that others will think that they’re complaining or that pain means the cancer is getting worse. Or they think that pain is just something they have to accept. Sometimes people get so used to pain, they forget what it’s like to live without it. The medical team should ask about pain levels, but it’s up to you and the patient to be open about any pain she is having. “It can be hard for me as a doctor, because many times I see patients who want to know everything. And then I have caregivers who don’t want me to tell the patient everything. Yet the reality is that the patients know their bodies—they know what’s going on. So sometimes I get a situation where everyone knows the truth but tries to keep it from the other person to protect them.” —Dr. Crawford