 |
|
What Hospice Care Means for SurvivorsHospice care is patient- and family-centered care that focuses on relieving symptoms and increasing comfort and quality of life. The goal of hospice is to provide quality and compassionate care for people facing end of life. Hospice care can give you the information and support you need to make important and meaningful end-of-life choices. What Hospice Care Means for Survivors: Detailed InformationThis information is meant to be a general introduction to this topic. The purpose is to provide a starting point for you to become more informed about important matters that may be affecting your life as a survivor and to provide ideas about steps you can take to learn more. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Suggestions and Additional Resources documents for questions to ask and for more resources. At some point in your cancer journey, cancer-fighting treatment may no longer be effective in eliminating or stopping the spread of the disease. When long-term survival is no longer likely or possible, the nature of your care changes. The focus shifts from battling cancer to making you as comfortable as possible, while enhancing the quality of your life during your final weeks or months. Hospice care allows people with advanced cancer and other life-limiting illnesses to spend the remainder of their lives peacefully, surrounded by those they love. As the most compassionate, comprehensive and family-centered end-of-life care available, hospice can provide:
Many people are afraid to ask about hospice care, either for themselves or for a loved one, because they believe that choosing hospice means giving up. Yet hospice is not about giving up. Choosing hospice allows you to focus your energy on your quality of life. Hospice care provides an opportunity to make meaningful choices and to have those choices respected. Hospice also provides a compassionate, supportive network of professionals and volunteers to help manage the many physical, practical and spiritual challenges of end of life. Better pain management, assistance with getting your personal and legal affairs in order, and many options for emotional support are some of the reasons that survivors choose hospice care. Hospice is not about giving up hope, although what you and your loved ones hope for may change. You can hope to be free of pain and to have your loved ones, friends and caring health professionals support you. You can hope to find peace and acceptance in your life as it is in any moment. Sometimes, learning about these issues can be upsetting. But having this information will help you and your loved ones to make the best decision for your situation. The profound emotions that come with thinking about end of life are not discussed at length in this document. If you feel overwhelmed by the information presented, or if you would like help with the emotional aspect of facing end of life, talk to someone you trust, such as a family member, friend, health care team member, social worker, faith-based advisor or mental health professional. There is help available, and you do not have to face these decisions alone. Note: As with all LIVESTRONG documents, individuals living with cancer will be referred to as "survivors." Also in keeping with LIVESTRONG style, this document will talk directly to you, the survivor, even though the topic may not relate to your current needs or condition. The terms "family" and "loved ones" are used to mean all of the people that you care about and turn to for support, including relatives, spouses, partners and friends. The term "caregiver" is used to mean whoever is providing most of your day-to-day care, whether that person is a spouse, partner, child, sibling, relative, friend or privately hired person. A document describing hospice from the caregiver's point of view can be found in the list of Practical Topics. What you will learn from this document This document describes how hospice care works in caring for the needs of survivors and their loved ones at the end of life. It discusses the services that many quality hospice organizations provide. These services allow survivors with advanced cancer to die comfortably and with dignity when that time comes. Also included are questions for survivors and their loved ones to discuss so that they can plan and make informed decisions about end-of-life care. Information is organized into eight major sections to answer most common questions about hospice care. Included are descriptions of the following:
Who is this document for? Anyone considering hospice may find this information useful. However, this document discusses hospice care as it relates to cancer survivors who are facing the end of life. The information focuses on the relationship between survivors and their caregivers who are family members, partners and friends. Other family members and friends will also learn a great deal about hospice by reading this document. This document provides an overview of what hospice is, how it works and what types of services are offered. Many different aspects of hospice care and end of life are mentioned, including funeral arrangements. The information may be helpful to you if you know that you are facing end of life, or if you do not yet know what your treatment outcome will be. Hospice staff can help survivors understand their options for caregiving when they do not have a loved one or friend to provide this kind of care. 1. Overview of Hospice Care Hospice is patient and family-centered care that focuses on relieving symptoms and increasing comfort and quality of life. The goal of hospice is to provide quality compassionate care for people with life-limiting illnesses until death occurs naturally. Hospice care includes palliative care, an approach that emphasizes your total well-being and that of your loved ones. Palliative care serves to prevent, treat or eliminate discomfort whenever and however it appears. You may hear the term palliative care used to describe the type of care given in hospice programs. A hospice organization provides care through a team of professionals and volunteers who work closely with the survivor and his or her caregivers and loved ones. Hospice care workers are trained in supporting the physical, emotional, spiritual and practical needs of survivors and their loved ones at the end of life. Hospice care is most often given at home, with a family member, partner, friend and/or hired caregiver providing and managing day-to-day care. However, the hospice team regularly visits survivors to provide hands-on care wherever the survivor is living. This may be in any of the following locations:
The mission of hospice care is to:
2. End-of-Life Care Planning Thinking about end of life can be upsetting and emotionally overwhelming. However, preparing for and making choices about end-of-life care, while extremely difficult, can offer you and your loved ones a sense of relief and control. Such planning can be reassuring for everyone involved, because knowing what lies ahead helps lessen fears of the unknown. What should survivors think about while planning for end-of-life care? You can begin planning for end-of-life care by asking yourself some basic questions and discussing your desires with your loved ones. If you have no one who can easily serve as your caregiver, let your health care team know so that together you can plan the best level of end-of-life care for you.
Knowing what you want and learning if such care is available will make conversations with your loved ones easier as you make decisions that work best for everyone. What are advance directives and why are they important? Advance directives give you the control and legal ability to state exactly how you want to be cared for and who you want to make decisions for you if you become unable to communicate your wishes. When you are no longer able to discuss medical options with your health care team or your loved ones, advance directives make your wishes known and specify the types of medical support you do and do not want. Such things as feeding tubes, breathing machines and cardiopulmonary resuscitation (CPR) are discussed in these documents. Advance directives include documents such as a "Directive to Family and Physicians," more commonly known as a "living will," a "Medical Power of Attorney," and a "Do Not Resuscitate" (DNR) order. These documents can be prepared at your request and are given to you to sign before they are given to your physicians. You will decide what provisions will be included in each document. However, if you are incapacitated and not able to clearly communicate your wishes when hospice care is needed, then certain family members can prepare these documents on your behalf. A "Do Not Resuscitate" (DNR) order is an advance directive given to physicians that states that no life-saving medical procedures, including CPR, are to be used if the heart or breathing stops. CPR is generally not helpful for maintaining high quality of life and for allowing a peaceful death for survivors with advanced cancer who are approaching end of life. Hospice staff and your physician can discuss with you the benefits and risks of CPR and a DNR order so that you can make an informed decision. Hospice professionals support survivors' rights to make their own decisions. You do not have to have a DNR order to receive hospice services. If you do want to have a DNR order, hospice staff can help you get one. If advance directives have not been completed at the time of hospice admission, and you would like to complete them, the staff will work with you and your loved ones to finalize these documents if you ask for this help. Each option will be clearly explained so you can make informed decisions. You can make changes to advance directives and DNR orders at any time. When does a survivor become eligible for hospice care? Hospice can begin as soon as a referral is made by your physician. This is called a "referring order." Your physician must state that you have a life expectancy of six months or less if the cancer follows its likely course. You may still be quite active, able to carry on your daily life and even travel at the time you are referred to hospice. Hospice benefits are unlimited, which means that if you live longer than six months, and your physician states your prognosis (life expectancy) is still less than six months if the cancer runs its likely course, then you can continue to receive hospice care. Hospice care does not always end in death. For some hospice patients, there is a certain amount of improvement when admitted to a hospice program. Some people return to longer term care if the course of their illness actually improves during the time they are receiving hospice care. When should hospice be discussed, and who brings up the subject? You may ask to talk about hospice whenever you wish. Usually, the discussion about hospice takes place when:
You, your partner, a family member, your doctor, a nurse or social worker may bring up hospice as a possible option for you. Many physicians hesitate to talk about hospice because they do not want patients to think they are giving up on treating them. However, there may come a point when you no longer want to fight the disease. You may simply want to rest and focus your time and energy on quality of life and being with loved ones rather than on a cure. Be clear with your loved ones and your health care team about your wishes. Remember that choosing hospice care does not mean that you have "given up," but rather that you have chosen to focus your energy on your quality of life. What is the best way for families and loved ones to discuss and agree on hospice care? Survivors are sometimes ready to enter hospice before their loved ones are prepared for this step. Your loved ones may suggest that you continue with possible treatment options. Or, the situation may be reversed. A caregiver or family member may recommend hospice as an option before you are ready. You know your body. You know how you are truly feeling. This is your life and your decision. You may choose hospice care, or you may not. Let everyone know what you think is best for you. If your loved ones are struggling with your decision about hospice care, then talk to a health care provider, social worker or mental health professional. They may be able to talk to your loved ones about their feelings and concerns. Who makes the final decision about hospice care? You will make the final decision, unless you are unable to communicate. You and your loved ones can make this decision together. Sometimes spouses or families can make the decision if a survivor is unable to express his or her wishes. A physician must sign a "referring order" to hospice, which certifies that your life expectancy is six months or less if the cancer runs its likely course. If you live longer than six months, you can continue to receive hospice benefits if your physician states that your life expectancy is still less than six months. Does choosing hospice mean survivors are giving up hope? No, hospice does not take away hope - quite the opposite. Hospice can help you find hope for new things, like getting the care you deserve, finding relief from pain or being able to spend time with people you love. When death appears inevitable, time becomes extremely precious. You have a choice about how you want to spend your remaining time. Hospice makes you as comfortable as possible while supporting you in doing those things that are most important and meaningful to you. How much does hospice cost, and how is it paid for? Most health insurers have a hospice benefit that pays for all or most of the costs associated with the hospice care listed below. This means that families usually pay very little and often nothing for this end-of-life care. Hospice benefits pay for:
Some insurers that provide a hospice benefit include:
If you do not have or qualify for any form of health insurance, some hospices can still provide care at little or no cost. Talk with several hospice organizations to find out what is available. Some costs are not covered by health insurers when hospice care is given in a retirement home or nursing facility. In this situation, a survivor would be responsible for paying for:
3. Levels of Hospice Care Hospice care is flexible and can be molded to fit into your life and lifestyle in whatever ways work best for you and your loved ones. How does hospice care work? The different levels of hospice care include the following:
You may receive the majority of hospice care at home, but prefer that death occur somewhere else. These choices, though very difficult, should be discussed with your loved ones early on so that everyone is comfortable with what occurs during the final days and hours and so that a plan can be put into place. Who provides hospice services? A team of trained health care professionals, volunteers, your partner, family or friends and, possibly, hired caregivers work closely together to provide hospice care. This team includes:
* Note: "Chaplain" is the term used to describe a professional who is trained to discuss spiritual questions that often become especially important at the end of life. Hospice chaplains do not promote any particular religion or belief system. If you are at home, the key person on your hospice team is your primary caregiver - your spouse, partner, child, sibling, a relative, friend or privately hired person. Most likely, this is the person who has been with you throughout your cancer journey, someone you trust and with whom you feel totally comfortable. Caregivers do many things, such as giving medication, continually monitoring changes in your condition, preparing meals and helping with all aspects of personal care to name a few. Your caregiver will work closely with the hospice staff to keep you as comfortable as possible. Being a caregiver can be extremely rewarding. Many partners, family members or friends who have helped with caregiving find it very satisfying and would not have chosen any other option. However, caregiving is also a big responsibility that is both physically and emotionally demanding. Talk with your loved one and make sure you are both prepared for the challenges ahead. Hospice may not work for all families or all situations. If you do not have a primary caregiver, the hospice team will assist you in finding available community resources and support. 4. Medical and Physical Care The hospice staff will work with you, your personal doctor and caregiver to develop a "plan of care" that addresses your specific symptoms. This plan will change as your condition changes, with the entire hospice team monitoring and responding to your changing needs at all times. Medical equipment, such as an adjustable hospital bed, may be arranged by the hospice for you to use at home to keep you more comfortable and make caregiving easier. Hospice also provides necessary medical supplies such as bandages, gloves, syringes and catheters as needed. How is pain managed? Some people experience little or no pain at the end of life. For others, pain may be constant and intense. Pain that cannot be relieved at least a little bit is rare. Hospice physicians and nurses are experts in using the most advanced pain control methods available.
Different pains need different medications, so hospice staff will ask you questions about what the pain is like and what makes it better or worse. Tell the hospice staff and other caregivers when you are in pain, so that you can get the help you need. The hospice nurse will be your primary medical contact. If your condition requires new medications, the nurse will talk to your oncologist, primary care physician, or the hospice physician who will write the prescriptions. The hospice nurse also:
What is involved with personal care? Your caregiver and home health aides help you with personal care, including eating, dressing, bathing, grooming, toileting and other activities of daily living. Research shows that families find personal care to be the most physically and emotionally challenging aspect of caregiving. For some families this is satisfying and rewarding. For those who are not comfortable providing this care or need extra help, hired private home health aides can help caregivers. Hospice covers home health aide visits a few days a week as needed, but additional hours, if needed, may not be paid for by insurance. Does the survivor's primary physician remain involved? The physician who has been providing most of your care (oncologist, pain specialist or family physician) will discuss with the hospice staff your current condition and symptoms, as well as the history and course of your illness. Some physicians think they can no longer be of service to you once you enter hospice. Tell your doctor if you want his or her continued involvement. The hospice team will keep your doctor informed about your condition on a regular basis. Your doctor (oncologist or primary care physician) usually remains in charge of your care. However, the hospice physician or medical director works with your doctor to help oversee your hospice team and your overall end-of-life care. Does cancer-fighting treatment continue during hospice care? In most cases, cure-focused treatment does not continue once hospice care begins because:
Be sure to find out exactly what the hospices in your community can provide and what the goal of any treatment is. 5. Emotional and Spiritual Care Hospice care offers emotional and spiritual support for both you and your loved ones. The social worker, chaplain and sometimes other hospice team members provide this support. Social workers, if requested, answer questions and help you and your loved ones talk about how you are feeling and what you are experiencing. Should tensions arise among family members or loved ones, your social worker can offer assistance in discussing difficult issues. The hospice chaplain, if requested, works alone or with your own spiritual advisors to answer questions and guide conversations about the meaning of life, death and other spiritual issues you and your loved ones may want to discuss. Both your social worker and chaplain also:
What emotions can be expected? Survivors and their loved ones are often in different places emotionally when hospice care begins. You may be accepting the reality of life's end, while your loved ones are still struggling. Patience and respect are most helpful for all involved. You and your loved ones may experience a full range of emotions as death draws near. The hospice journey can be a tremendously sad time for everyone, and the emotions are often intense. At the same time, families often grow closer as they remember and cherish the life and good times they have shared - laughing, telling stories and being open about their feelings, perhaps as never before. Each person's experience at the end of life will be unique to him or her. Some individuals have many loved ones or friends while others may take comfort in the support provided by caring hospice staff members or volunteers. Hospice provides a peaceful environment for any survivor no matter what his or her situation. It is a good idea to talk with hospice staff about your emotions regarding hospice care, as well as your willingness or ability to have loved ones present. These factors may affect your overall quality of life, and hospice staff are both willing and able to help you manage these challenges. You and your loved ones are likely to feel some or all of these emotions:
What is the best way for families and loved ones to talk about death? Some people are unable or unwilling to talk about death, while others are willing to explore the subject with each other. Do what feels best for you and your loved ones. If you want to talk more openly with your loved ones, you can ask your hospice social worker to help you and your loved ones talk about these difficult issues. 6. Practical Care You and your loved ones will receive help with everything from insurance and other financial matters to routine chores. Some hospice organizations employ staff that may provide light housekeeping. In addition to emotional support, the social worker on your team helps your loved ones with many practical concerns. This professional:
Most hospice organizations have trained volunteers from the community to help survivors and their families. Volunteers may be available to:
In addition to the hospice team, you may wish to consult with legal or financial advisors. These professionals can help you finalize details of your advance directives and will, while working with your partner or family to prepare for the financial future. If you want to discuss funeral or memorial service arrangements with your loved ones, then do so. Providing them with information about the kind of service you want is likely to be helpful in the future. If you do not want to discuss these arrangements, you can allow your loved ones to make these decisions themselves when the time comes. If you want to talk to your loved ones about what type of ceremony, music or readings would be meaningful to you, but they are not ready for such a discussion, then talk to a member of the hospice staff, a social worker, a faith-based advisor or trusted friend or family member. These individuals may be able to reassure your loved ones that you truly want to talk about these decisions, or they may be able to explain your wishes to your loved ones for you. Also, let loved ones know where to find important legal and financial documents that they may need later. 7. Family Care Hospice is patient and family-centered, meaning that it is designed to look after the needs of your loved ones as well as your needs. Caregivers and loved ones are encouraged to seek and use the services of the hospice team to express their feelings, talk about concerns, ask questions and resolve problems or concerns. Support services are available for families and loved ones throughout all stages of hospice care, including bereavement. 8. The Hospice Choice Where are hospice organizations located? Most communities have more than one hospice organization. Your health care team can refer you to hospice organizations in your area. The Suggestions document provides more information on how to find and talk with hospice organizations about the specific services they provide. Is hospice really the best option for end-of-life care? Everyone's cancer journey is unique. What is important is that you do what you feel is best for you and your loved ones. Hospice is regarded as the most complete and compassionate end-of-life care available for both survivors and those who love them. Hospice care helps you and your loved ones say good-bye gently and peacefully. This document was produced in collaboration with: Betty R. Ferrell, PhD, RN, FAAN, Cancer Survivorship Consultant Works cited: American Cancer Society. When the Focus Is on Care: Palliative Care and Cancer. Eds. Kathleen M. Foley, MD et. al. Atlanta: American Cancer Society Promotions, 2005. National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care. May 2004. "Choosing a Hospice." NHPCO.org. 2005. National Hospice and Palliative Care Organization Caring Connections Program. "All About Hospice: A Consumer's Guide." Hospice-america.org. 2005. Hospice Association of America. "Hospice Care." PLWC.org. 2005. People Living With Cancer. "What Does Someone Dying Need?" Hospicenet.org. 2005. Hospice Net. "The Hospice Choice" MMHospital.org. 2005. Marietta Memorial Hospital. "Knowing What to Expect Helps You Help Your Care Recipient" Caregiving.com. 2005. Caregiving.com. Byock, Ira R. "Hospice and Palliative Care: A Parting of the Ways or a Path to the Future?" Journal of Palliative Medicine 2 (1998): 165-176.
What Hospice Care Means for Survivors: SuggestionsThe suggestions that follow are based on the information presented in the Detailed Information document. They are meant to help you take what you learn and apply the information to your own needs. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Additional Resources document for links to more resources. How to find a hospice provider Ask your health care team to refer you to hospice providers. The National Hospice and Palliative Care Organization (NHPCO) has a state-by-state directory of hospice providers on its Web site, www.nhpco.org. You may also receive assistance by calling the NCPCO "HelpLine" toll-free at (800) 658-8898. Good hospice organizations listen and help you make decisions that work best for you and your family. Call those providers you want to interview, and ask to meet with the admissions representative. Questions to discuss with hospice providers About the Hospice
Staff
Services
Medical Care
Volunteers
Family Support
What Hospice Care Means for Survivors: Additional ResourcesThe resources listed below provide more detailed information and support services to help you with hospice care. Please read the Detailed Information and Suggestions document for more information and questions to ask. Click a resource for more information:
National Hospice and Palliative Care Organization
The National Hospice and Palliative Care Organization, working with the National Hospice Foundation, offers information on end-of-life planning and care, pain management, advance directives, caregiving, grief, financial planning and choosing a hospice facility. Publications cover topics such as choosing a hospice and communicating end-of-life wishes. Financial planning information includes ways to pay for hospice care, Medicare hospice benefits and a glossary. Through this site, you can request information about your state's laws and requirements for advance directives. The site also has a tool for finding hospice programs in your community. Some information is available in Spanish. LIVESTRONG SurvivorCare Program
LIVESTRONG SurvivorCare offers assistance to all cancer survivors, including the person diagnosed, caregivers, family and friends. The program provides education, information about treatment options and new treatments in development, counseling services and assistance with financial, employment or insurance issues. To provide these services, LIVESTRONG SurvivorCare has partnered with several organizations, including CancerCare, Patient Advocate Foundation and EmergingMed. The LIVESTRONG Survivorship Notebook is a tool that can help you organize and guide your cancer experience. The portable, three-ring binder contains a variety of information covering a full range of physical, emotional and practical survivorship topics. You may order a free LIVESTRONG Survivorship Notebook at www.livestrong.org/notebook. Shipping and handling charges will apply. National Cancer Institute (NCI)
Cancer.gov, the National Cancer Institute Web site, provides accurate, up-to-date information on many types of cancer and the challenges cancer can bring. You can also use the site to search for information by cancer type or topic, and you can access information about treatment-related issues. Information about financial and insurance matters is also included. You can learn how clinical trials work and search for a clinical trial in your area. This site has a detailed dictionary of cancer terms. Web site information and publications are available in Spanish.  Return to top
American Cancer Society
The American Cancer Society Web site contains information about many of the challenges of cancer and survivorship. You can search for information by cancer type or by topic. ACS provides a list of support groups in your area, or you can join online groups and message boards. Some information on the Web site is available in Spanish, Chinese, Korean and Vietnamese. Information specialists can answer questions 24 hours a day by phone or email.
|
Email this Topic
