What Hospice Care Means for Survivors

Hospice 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.

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What Hospice Care Means for Survivors: Detailed Information

This 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

In cases when cancer has advanced so that life expectancy may be six months or less, the nature of care often changes. The focus may then shift from battling cancer to creating comfort and enhancing the quality of life. Hospice care is meant for the time when cancer treatments are no longer effective in eliminating or stopping the spread of the disease.

Choosing hospice services is not about giving up. Hospice care provides an opportunity for the survivor and his or her family to make meaningful choices and to have those choices respected. This type of care can be cancelled at any time and restarted later if it is needed. Knowing this may make the decision to choose hospice care easier.

Thinking about advanced cancer and end-of-life issues can be difficult. However, planning for advanced care can help you to make the best decisions in case that time comes. The information provided in this document is practical and focuses on giving survivors the tools they need to make important plans and choices during such a time.

Talk with someone you trust if this topic becomes depressing or overwhelming. A member of your health care team member, such as your doctor, nurse, or oncology social worker, can help you find someone to help you with these feelings. A referral to a hospital chaplain, community support group or a licensed counselor may also be helpful. You do not have to face these decisions or challenges alone.

The information that follows includes:

• An overview of hospice care
• When hospice services should be considered
• The roles of hospice professionals
• The role of caregivers
• How to get hospice services
• How to pay for hospice care

What is hospice care?

Hospice provides a compassionate, supportive network of professionals and trained volunteers to help manage the physical, practical and spiritual challenges that can arise during advanced cancer. Better pain management, assistance with getting personal and legal affairs in order, and emotional support are some of the reasons that survivors choose hospice care.

Hospice services are family-centered and are delivered by a team of specially trained and compassionate health care professionals and volunteers. They work with patients, loved ones and caregivers to help ease the pain and stress that can occur during advanced illness.

The term palliative care is often used to describe the type of care given in hospice programs. Palliative care emphasizes the total well-being of the survivor as well as that of loved ones and caregivers. The goal is to prevent, treat or eliminate discomfort whenever and however it appears.

Hospice care allows people with advanced cancer and other illnesses to be surrounded by those they love and to be as comfortable as possible. The care is compassionate and comprehensive. Care planning involves the patient, loved ones and caregivers.

Hospice care includes services such as:

• Medical and physical care
• Best pain-control treatments
• Emotional and spiritual care
• Practical care assistance

Where are hospice care services provided?

Hospice care is often provided in the patient's home with a loved one, friend or hired caregiver managing day-to-day care. The professional hospice team makes regular visits to support the patient and caregivers and to provide additional services.

Hospice care may also be provided in other locations such as:

• The home of the caregiver, friend or loved one
• A hospice facility
• A retirement or board and care home
• An assisted living facility
• A nursing home
• A hospital

A hospice program works closely with the patient and all of the caregivers and loved ones who want to be involved. Hospice care workers are trained to support the physical, emotional, spiritual and practical needs of all those who are supporting someone with advanced cancer.

When should hospice services be considered?

Hospice care can be discussed at any time. Often, the discussion about hospice services takes place when the patient and his or her loved ones learn that:

• The cancer may no longer be treatable
• Additional therapies will not provide any benefit
• Life expectancy could be six months or less
• The patient's physical decline and exhaustion may be permanent
• Treatment is no longer desired by the patient

Many physicians hesitate to bring up the subject of hospice because they do not want patients to think that they have given up. There may come a time when you think that hospice care should be considered, but are not sure how to start this conversation. If this is the case, a member of the health care team can help you decide the best way to do this.

Sometimes a patient is ready to consider hospice care before his or her loved ones are. In other cases, the family may start thinking about the need for services first. Often, the decision is made jointly by the patient and his or her loved ones. If you are struggling with a decision about hospice care, it may be helpful to talk with the treating doctor, nurse, oncology social worker, licensed counselor or member of a faith-based organization about your feelings and concerns.

It is generally the patient's right to make the decisions about hospice care. However, if a time comes when a patient cannot communicate his or her wishes, a spouse or other family member may be asked to make a decision.

In order to start hospice services, a physician must sign a "referring order" that certifies that the patient's life expectancy is six months or less if the advanced cancer runs its expected course. If a person in hospice care lives longer than six months, hospice benefits can be continued if a physician states that the person's life expectancy is still less than six months. The health care team or an oncology social worker can help you find out what hospice care is available in your community and how to arrange for it.

How does hospice care work?

Hospice care is flexible and can be molded to fit the needs and lifestyles of the patient and his or her caregivers. Care is primarily focused on making the patient as comfortable as possible when a cure can no longer be expected.

• Medical and physical care for the patient
• Management of the best prescribed pain-control treatments
• Emotional and spiritual support for patients and their loved ones
• Assistance with practical issues for patients and caregivers

The different levels of hospice care include:

• Home care is provided in a private home, nursing home, assisted living facility or other group home. The hospice staff offers hands-on care, assessment of the patient's condition and symptom management. They also help caregivers learn how to provide day-to-day care. Hospices services include updates about what is happening and assisting the patient and caregivers to plan for the future.
• In-home crisis care (also called continuous care) is short-term care that is available in the home when symptoms cannot be managed by the usual caregivers. Under some health insurance plans, between 8 and 24 hours of nursing support for crisis care can be provided in the home each day for a limited number of days. The hospice provider determines when such care is needed and for how long. Depending on the needs of the patient, he or she might remain at home or be hospitalized for pain or symptom management following in-home crisis care.
• Inpatient hospice care is delivered in health care facilities such as a hospital, nursing home, or hospice facility. This type of care is used to manage pain or other symptoms that cannot be addressed at home. The length of stay depends on how long it takes to control the symptoms. If needed after the symptoms have been controlled, hospice can help make arrangements for continued care.
• Respite care provides time for home caregivers to rest while the patient is cared for in an inpatient setting or nursing facility for up to five days.

In some cases, the majority of hospice care is provided at home. However, the patient or loved ones can choose that death occur somewhere else such as a hospital. While this is likely to be a very difficult subject to discuss, it is generally best for the patient and his or her loved ones to make a decision like this early. This will help ensure that all concerned are aware and comfortable with the plans.

Who are the professionals that provide hospice services?

Hospice care is a team effort. Caregivers work with trained health care professionals and any volunteers who assist with the care of the patient. The following table provides an overview of the roles of various hospice professionals:

Who makes a good caregiver?

Asking for and accepting assistance from others may be hard to do—but it will probably be needed during advanced cancer. It may help to keep in mind that, during times of need, others have the opportunity to serve and feel good about themselves for doing so.

Caregiving can be a full-time job. Take time to consider the personal strengths and limitations of those who will be providing assistance. Talk openly with reliable family members, loved ones and friends about specific tasks that you need help with. Tell them when and how they can help. Ask someone to develop a schedule and a contact list of those helpers you trust. This will help you and others schedule these helpers and stay in touch with them.

Caregiving requires a time commitment. The amount of time and energy needed to provide care for someone is not easy to predict. Sometimes a rotation schedule with other family members and loved ones is needed. Because caregiving can be hard work at times, caregivers will need to take time off from time to time.

Serving as a home hospice caregiver is covered by the Family Medical Leave Act (FMLA) which protects an individual's job standing and benefits during unpaid leave of up to 12 weeks. Not all employers are required to offer this benefit, so the caregiver will have to discuss the FMLA with his or her human resources department about options.

Caregivers may also want to talk with their employers about making temporary changes at work to enable them to continue to provide care such as:

• Flexible hours, schedule changes or working from home
• Using vacation and sick leave time

What types of assistance are available through hospice programs?

Hospice staff and caregivers will work together to set up a space in the home for ease of providing care. They arrange for equipment and supplies that may be needed such as:

• Hospital bed
• Oxygen
• Bedside commode (toilet)
• Over-the-bed table
• Shower chair
• Wheelchair
• Treatment supplies such as bandages, syringes, sponges, catheters and surgical gloves

The following is a typical example of scheduled home hospice visits:

• Registered nurse: 1-2 times per week or more often as needed
• Social worker: 1 time per month or more often as needed
• Chaplain: 1 time per month or more often as needed
• Home health aide: 1-3 times a week or more often depending on needs
• Volunteers: Several hours per week as needed by patient or caregivers

Hospice services can also help with everything from insurance and financial matters to routine chores. Some hospice organizations provide light housekeeping as part of their covered services.

A hospice social worker can help with many practical concerns such as:

• Explaining and helping to complete advance directives, if requested
• Identifying and explaining insurance benefits
• Explaining what services hospice benefits pay for
• Setting up a system for staying organized
• Linking caregivers and family to community resources
• Setting up services with a licensed counselor or support group
• Arranging for respite care to give caregivers time off
• Contacting friends and relatives

Caregivers may need breaks (respite) to avoid physical and emotional exhaustion. Respite care services can provide this type of relief for caregivers for up to five days. Hospice benefits pay for the patient to be cared for outside the home during respite care for the main caregiver, such as at a hospice facility or other residential care facility. During this time, the caregiver can visit the patient. If you are interested in respite care, talk with the hospice staff as soon as possible. It may take some time to arrange for this type of break.

What is the best way to work with the hospice staff?

Patients, their loved ones, and other caregivers are a vital part of the hospice team. The hospice staff should be there every step of the way to help as needed. It is part of their hospice services to be available anytime to answer questions or to help with unexpected needs.

The hospice staff should respectfully listen to you and respond quickly at any hour of the day or night. This includes making home visits at any time, if needed, to address symptoms or issues that develop. Keep the 24-hour emergency number for hospice in a visible place for all caregivers and loved ones.

Some tips for working well together include:

• Keep a notebook with all caregiving information in one place; have this notebook with you when you talk to the staff.
• When you are describing a new symptom, give as many details as possible such as when it started, how long it lasted, and whether there are any needs. These details help your hospice team find the best solutions.
• Always feel free to ask questions and seek help from the hospice staff.
• If you have questions about something, keep asking until you completely understand.

Why are advance directives important during advanced cancer?

Advance directives are legal documents that can be provided to family and physicians to advise them of a patient's care preferences. They include a Living Will, a Medical Power of Attorney, and a Do Not Resuscitate (DNR) order. Ask the health care team or hospice staff to talk with you about the benefits and risks of each type of directive.

Hospice programs do not require these directives. However, they support the right of patients to make their own decisions about care. Advance directives give patients the control and legal ability to state how they want to be cared for and who they want to make decisions for them if they ever become unable to communicate their wishes. These directives specify the types of medical support wanted by the patient including the use feeding tubes, breathing machines, and provision of cardiopulmonary resuscitation (CPR).

Advance directives are prepared at the patient's request and must be signed by him or her before they are given to the health care team. The patient decides what will be included in each document. If he or she becomes unable to clearly communicate his or her wishes for advanced care, certain family members can prepare these documents on the patient's behalf.

If advance directives have not been completed at the time of hospice admission, and the patient would like to complete them, the staff can help to arrange for and finalize these documents. Each option will be clearly explained so that the patient can make informed decisions. Advance directives and DNR orders can be changed or cancelled by the patient at any time.

Advance directive forms that are approved for your State can be downloaded at www.caringinfo.org

How can hospice staff and caregivers help manage pain?

People living with advanced cancer may experience many different symptoms. The hospice staff will tell you what changes or symptoms you need to watch for. As the illness progresses, caregivers may spend a lot of time and energy trying to manage symptoms that keep changing. Remember that all difficult symptoms can be relieved either somewhat or completely, so be sure to ask your hospice team for help.

Different medications are often given around the clock to relieve symptoms. Sometimes, treating one symptom can cause others to appear. Caregivers will be asked to observe and discuss changes with the hospice staff to help relieve physical discomfort the patient may have.

Some people experience little or no pain during advanced cancer. For others, pain may be present, but it is rare that pain that cannot be relieved to some degree. Hospice physicians and nurses are experts in using the most advanced pain control methods available. Pain medications are generally taken by mouth, usually on an around-the-clock basis to control the pain and prevent new pain from appearing.

In some cases, home care may not be possible at a certain point. Try to be clear in your own mind what loved ones and caregivers want to do and are realistically able to do. Then work with the hospice staff to develop a plan for what is best for everyone involved.

What types of emotional and spiritual support are available?

Hospice care can offer 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 also assist 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 can offer caring companionship and lead discussions about death and dying. They can also help you and your loved ones with grief and bereavement issues.

What emotions are common for loved ones and caregivers?

When hospice care is started, many caregivers and loved ones feel overwhelmed. Many types of emotions, both expected and unexpected, may come and go.

Emotions such as the following may be experienced by both patients and caregivers during advanced cancer:

• Denial
• Fear and anxiety about an unknown future
• Anger about the cancer
• Grief and tremendous sadness over loss
• Relief that the pain and suffering have been eased
• Peace and acceptance

Many people are able to use the time during advanced cancer and hospice care to grow closer. Patients and caregivers may celebrate the life they have shared by talking, laughing, telling stories and being open about their feelings--perhaps as never before. Everyone deals with advanced cancer differently. There is no wrong or right way.

Allow yourself to express any sadness, grief and acceptance with your loved ones and others you trust. These emotions are to be expected and part of the process that both the patient and caregivers go through.

It is very difficult to determine what another person is thinking or feeling. However, some emotional changes can be accompanied by physical changes that should be watched for and discussed with the hospice staff. The following table provides an overview of what to watch for:

Repressing feelings can be harmful. Expressing and sharing them can be freeing. Find someone to talk with and cry with--someone who will just listen and not judge you for how you are feeling. Do what is right for you, and trust yourself to know what you need. You may find comfort in talking with the hospice chaplain, your own spiritual advisor, an oncology social worker, or other counselor.

Keep in mind that pain problems can lead to or worsen emotional issues for patients. Certain medications can sometimes cause emotional symptoms to occur. The hospice nurse will help you understand what to do to if this happens.

How are hospice care services paid for?

Most health insurers have a hospice benefit that pays for all or most of the costs associated with the types of hospice care listed below. This means that families usually have to pay nothing or very little for this type of care. Some costs are not covered by insurers when hospice care is given in a retirement or nursing facility such as rent, meals and routine care services that are generally provided by the facility. Hospice does not pay for the services of private caregivers that are hired.

Hospice benefits typically pay for:

• Physician services
• Nursing care
• Medical equipment (like wheelchairs and walkers)
• Medical supplies (like bandages and syringes)
• Medications for symptom control and pain relief
• Short-term care in the hospital (including respite and inpatient care for pain and symptom management)
• In-home crisis care (as determined by staff) for short-term 24-hour nursing care to manage difficult symptoms
• Home health aide and homemaker (housekeeping) services
• Physical and occupational therapy
• Speech therapy
• Social work services
• Dietary counseling
• Grief support to help you, your family and other loved ones

Look into benefit and insurance programs that may provide hospice benefits including:

• Medicare - The Medicare Hospice Benefit
• Medicaid (in most states) – The Medicaid Hospice Benefit
• TRICARE (military health system)
• Most private health insurance companies

If the patient does not have insurance or qualify for any form of health benefits, some hospices may still be able to provide services at little or no cost. Talk with several hospice organizations to find out what is available.

How can preplanning a funeral or memorial service be done?

You may want to discuss funeral or memorial service arrangements with your loved ones. Preplanning can provide them with information about the kind of service you want. It is likely to be helpful to them in the future. If you do not want to discuss these types of arrangements, your loved ones can make these decisions themselves when the time comes.

If you want to do preplanning, but loved ones are not ready for such a discussion, talk with a member of the hospice staff, a social worker, a faith-based advisor or trusted friend or family member. Ask for help and reassure your loved ones that you want to talk about these types of decisions. Hospice staff will also be willing to explain your wishes to your loved ones for you if that is what you prefer.

Thinking about advanced cancer and end-of-life care can be difficult. However, preparing for and making decisions may offer you some sense of relief and control. Planning can be reassuring for everyone involved because knowing about the patient's preference can lessen the stress of making decisions during difficult times.

This document was produced in collaboration with:

Betty R. Ferrell, PhD, RN, FAAN, Cancer Survivorship Consultant

Caroline Huffman, LCSW, MEd, Director of Patient Navigation Services, Lance Armstrong Foundation

Jennifer Zieger, MPH, Pancreatic Cancer Action Network

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.
www.nationalconsensusproject.org

"Choosing a Hospice." NHPCO.org. 2005. National Hospice and Palliative Care Organization Caring Connections Program.
www.caringinfo.org

"All About Hospice: A Consumer's Guide." Hospice-america.org. 2005. Hospice Association of America.
Hospice-america.org

"Hospice Care." PLWC.org. 2005. People Living With Cancer.
PLWC.org

"What Does Someone Dying Need?" Hospicenet.org. 2005. Hospice Net.
Hospicenet.org

"The Hospice Choice" MMHospital.org. 2005. Marietta Memorial Hospital.
MMHospital.org

"Knowing What to Expect Helps You Help Your Care Recipient" Caregiving.com. 2005. Caregiving.com.
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.
www.dyingwell.org

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What Hospice Care Means for Survivors: Suggestions

The 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. Also talk with family members, friends and neighbors for recommendations about hospice agencies to consider.
  • 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 Program

  • How long has the hospice organization been established in the community?
  • Who owns the hospice? Is it owned by an individual, a partnership or a corporation? Is it a for-profit corporation or a nonprofit corporation?
  • Is this hospice organization licensed by the state and certified by Medicare?
  • What other accreditation does the organization have?
  • What industry quality standards does the organization meet?

  About Staff

  • Who is the medical director and what are his or her credentials? Is he or she certified in hospice and palliative care?
  • What are the credentials of the other staff members?
  • How many of the nursing staff are certified in hospice and palliative care?
  • What are the credentials of the social workers and chaplains?
  • How are home caregivers trained?

  About Services

  • What services are provided by the hospice?
  • What services are provided in nursing homes or other residential care facilities?
  • At which facilities (hospitals, nursing facilities and other health care settings) does the hospice provide care?
  • Does the organization have its own facility for inpatient care? If not, where does the hospice provide inpatient hospice care?
  • Is there 24-hour access to the hospice staff?
  • What services are available after hours?
  • How often will the hospice staff visit the survivor and caregiver at home?
  • What hospice services are not paid for by insurance, Medicare or Medicaid?

  About Medical Care

  • How is the survivor's personal physician involved in hospice care?
  • What is the role of the hospice physician?
  • Which cancer-fighting treatments can be continued and which must be stopped?
  • Is there an RN (registered nurse) on-call 24 hours a day? Are the on-call RNs certified in hospice and palliative care?

  About Volunteers

  • Are volunteers available to help the family?
  • What type of training do volunteers receive?
  • What sorts of help do volunteers provide?

  About Family Support

  • How does the hospice organization support the family?
  • Are housekeeping services offered?
  • How and where is respite care provided?
  • How are the emotional and spiritual needs of the survivor and family addressed?
  • What type of bereavement support will be offered?
    
• Recordkeeping and Organization Tips

  The following suggestions can help caregivers and hospice workers provide better care:

  • Use a notebook or 3-ring binder with pockets to keep everything in one place including:
    
    
    • Medication journal – dosages, times to give, their effects
    • Prescriptions
    • Instructions from hospice staff
    • Phone numbers and other contact information
    • Medical records
      
      
      • Keep this notebook in one convenient place so anyone who comes into the home has easy access to it.
      • Make notes about symptom changes, including dates and times.
      • Reserve a section for questions that you write down as they occur.
      • When you talk with the hospice staff, take notes so you can refer to the information you receive at a later time.
      • Use a calendar for keeping track of visits from the hospice staff, volunteers, helpers, family and friends.
      • Keep all medicines in one place and out of reach of children and pets.
      • Keep supplies within easy reach of where you will be using them.
      • Make a list of the important phone numbers you will call often and keep this list in a convenient location such as on the refrigerator. Include the names and contact information for the following:
        
        
        • Hospice staff, including day and night numbers
        • Caregivers' cell phone numbers, work numbers and other emergency information
        • Pharmacy
        • Family members and friends who can help
        • Individuals who can make medical decisions

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What Hospice Care Means for Survivors: Additional Resources

The resources listed below provide more detailed information and support services to help you with what hospice care means for survivors.  Please read the Detailed Information and Suggestions document for more information and questions to ask.

LIVESTRONG SurvivorCare Program
www.livestrong.org/survivorcare

Email: Send email through the LIVESTRONG website.
Phone: 1-866-673-7205
1-866-927-7205 (Spanish)
Intake Coordinator is available for calls Monday through Friday, 9:00 a.m. to 5:00 p.m. (Central Time). Voicemail is available after hours.

LIVESTRONG SurvivorCare offers assistance to anyone affected by cancer, including the person diagnosed, loved ones, caregivers and friends. The program provides information about treatment options and matching to clinical trials or treatments in development. Counseling services and assistance with financial, employment and insurance issues are also available. To provide these services, LIVESTRONG SurvivorCare has partnered with several organizations including CancerCare, Patient Advocate Foundation and EmergingMed.

American Cancer Society (ACS)
www.cancer.org

Email: Submit questions in English or Spanish from the "Contact Us" page.
Phone: 1-800-227-2345
TTY for deaf or hard of hearing callers: 1-866-228-4327

The American Cancer Society (ACS) offers 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. You can join online groups and message boards. Some information on the website is available in Spanish, Chinese, Korean and Vietnamese. ACS specialists can answer questions 24 hours a day by phone or email.

National Hospice and Palliative Care Organization
www.nhpco.org

Email: nhpco_info@nhpco.org
Phone: 1-800-658-8898
Spanish Language Helpline: 1-877-658-8896
Calls are answered Monday through Friday, 9:00 a.m. to 5:00 p.m. EST.

This organization offers information about pain management, advance directives, caregiving, grief, and choosing a hospice facility. Publications cover topics such as planning and communicating end-of-life wishes. Financial planning information includes ways to pay for hospice care. You can request information about your state's laws and requirements for advance directives. The site also helps you find hospice programs in your community. Some information is available in Spanish.

U.S. Institutes of Health - National Cancer Institute (NCI)
www.cancer.gov

Online: Online assistance is available in English or Spanish through the LiveHelp instant messaging system. This service is available Monday-Friday, 9:00 a.m. to 11:00 p.m. (EST)
Email: Send an email through the "Need Help?" section of the website
Phone: 1-800-422-6237
TTY for deaf and hard of hearing callers: 1-800-332-8615
Information specialists answer calls Monday-Friday, 9:00 a.m. to 4:30 p.m. local time.

The National Cancer Institute's website provides accurate information about the challenges cancer can bring. You can search for information by cancer type or topic. You can find information about treatment, financial and insurance matters. You can also learn how treatments in development work and search for a clinical trial in your area. This site also has a good dictionary of cancer terms, drug information and other publications.

Cancer information specialists can answer your questions about cancer and help you with quitting smoking. They can also help you with using this Web site and can tell you about NCI's printed and electronic materials. The knowledgeable and caring specialists have access to comprehensive, accurate information on a range of cancer topics, including the most recent advances in cancer treatment. The service is confidential, and information specialists spend as much time as needed for thorough and personalized responses.

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What Hospice Care Means for Survivors: Detailed Information

This 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: 

• Medical and physical care for you, including the best pain-control treatments available
• Emotional and spiritual care for you and your loved ones
• Practical care assistance for you and your loved ones

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:

1. Overview of hospice care
2. End-of-life care planning
3. Levels of hospice care
4. Medical and physical care
5. Emotional and spiritual care
6. Practical care
7. Family care
8. The hospice choice

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:

• respect dying and death as a normal process
• acknowledge that everyone has a right to die with comfort and dignity, surrounded by loved ones if that is what he or she wants
• allow survivors to live as actively as possible for as long as possible
• enhance the quality of life of survivors, families and caregivers
• support caregivers, family and friends as they care for their loved one
• respect the unique needs and wishes of survivors and their loved ones
• provide compassionate care that relieves pain and other symptoms
• allow the dying process to occur naturally
• provide grief and bereavement support before and after death
• be available to survivors wherever they live, regardless of race, ethnicity, sexual orientation or ability to pay
• allow death to occur in the setting that the survivor wants

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.

• If your condition gets worse, where do you want to live?
  • Where would you feel most comfortable during your final months and weeks?
  • Would this be your own home or the home of a loved one or friend?
  • Could you be living in another residential setting such as an assisted living facility or nursing home?
  • Would you like to go to a dedicated hospice setting, if available?
  • Where do you want to die - at home or somewhere else?
    
• Who would you want to take care of you, and who would you like to be your primary caregiver?
  • Who do you want to help you with your daily care needs, such as bathing, dressing, eating and going to the bathroom?
  • Who do you trust and feel totally comfortable with?
  • Who in your life is able and willing to stay with you and care for you in your final days?
  • Would your caregiver be your spouse, partner, another relative, friend or neighbor?
  • Would you like to have round-the-clock nursing or home health assistance?
  • Can you afford such assistance, because private services are not covered by hospice benefits?
    
    
• What, if any, types of medical support do you want to receive as death approaches?
  • Would you want health care workers to attempt to revive you with CPR if your heart or breathing stops?
  • Do you want life support technology to be used to attempt to keep you alive?
  • Do you want death to occur without medical interventions?

• What hospice organizations and other end-of-life care organizations are available in your area?

• What financial costs are associated with hospice care?

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 learn that you have a cancer that is not treatable and that you would not benefit from additional therapies.
• You hear from your physician that you have six months or less to live.
• You are exhausted and declining physically.
• You decide to discontinue treatment.

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:

• Physician services
• Nursing care
• Medical equipment (like wheelchairs and walkers)
• Medical supplies (like bandages and syringes)
• Medications for symptom control and pain relief
• Short-term care in the hospital, including respite and inpatient care for pain and symptom management (respite means giving a caregiver who is a partner, family member or friend a short break from caregiving duties)
• In-home crisis care (as determined by staff) for short-term 24-hour nursing care at home to manage difficult symptoms
• Home health aide and homemaker (housekeeping) services
• Physical and occupational therapy
• Speech therapy
• Social work services
• Dietary counseling
• Grief support for you and your loved ones
  

Some insurers that provide a hospice benefit include:

• Medicare - The Medicare Hospice Benefit
• Medicaid (in most states) - The Medicaid Hospice Benefit
• TRICARE (military health system)
• Some private insurance companies
  

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:

• Rent
• Meals
• Some routine care services that are provided by nurses and health aide workers who are employed by the retirement home or nursing facility

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: 

• Home care is given in a private home. The hospice staff visits to offer hands-on care, assessment of your condition and symptom management. They also help your caregivers learn how to provide day-to-day care.  Staff can explain what is happening and help you and your loved ones plan ahead.

• In-home crisis care (called continuous care) is short-term in-home care that is available when symptoms cannot be managed by your regular caregivers. Under some health insurance plans, crisis care nursing support can be provided in the home 24 hours a day for a limited number of days. The hospice organization determines when such care is needed and for how long. After in-home crisis care and depending on your needs, you might remain at home or may need to be hospitalized for pain or symptom management.

• Inpatient hospice care is delivered in health care facilities, such as a hospice facility, hospital or nursing home. This type of care is used to manage pain or other symptoms when they cannot be addressed at home. The length of stay will be different at each type of facility. After the symptoms have been managed, hospice can help you make arrangements for your continued care.

• Respite care provides time for home caregivers to rest while you are cared for in an inpatient setting or nursing facility for up to five days.

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. 

• Pain medications are generally taken by mouth, usually on an around-the-clock basis to control the pain and prevent new pain from appearing.
• If swallowing becomes difficult, medicines may be given in various other ways including in small amounts of concentrated medicine under the tongue or inside the cheek, by suppository, by skin patch, or through a feeding tube (if there is one).
• Breathing and relaxation exercises may also be used when appropriate.

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:

• monitors symptoms
• teaches caregivers how to safely provide day-to-day care
• helps caregivers respond to changing symptoms
• answers questions and provides information and support
• helps to coordinate your care

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:

• The goal of hospice care is to provide comfort during the dying process. 
• Most hospices do not pay for cancer-fighting treatment once hospice care begins. However, some hospices will pay for cancer-fighting treatment if the goal of the treatment is to decrease symptoms and increase quality of life rather than to cure the cancer.

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:

• offer caring companionship
• lead discussions about death and dying
• assist you and your loved ones with grief and bereavement

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:

• Denial about death
• Fear and anxiety of the unknown, the future and separation
• Anger that cancer is taking away life
• Guilt about lifestyle habits that may have affected your health (i.e., smoking)
• Grief and sadness  
• Relief that the pain and suffering are eased or that they are nearly over
• Peace and acceptance

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:

• explains and helps you complete advance directives, if requested
• identifies and explains available insurance benefits
• helps caregivers get and stay organized
• links your caregiver and family to community resources, such as meal delivery services
• arranges for respite care to give caregivers time to rest
• helps loved ones with funeral arrangements

Most hospice organizations have trained volunteers from the community to help survivors and their families. Volunteers may be available to:

• help with household chores and responsibilities
• run errands
• help with child care
• stay with you while your caregiver takes time to rest

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.
  
What other types of practical matters should be discussed?

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
Caroline Huffman, LCSW, MEd, Survivorship Program Manager, Lance Armstrong Foundation
Jennifer Zieger, MPH, Pancreatic Cancer Action Network

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.
www.nationalconsensusproject.org

"Choosing a Hospice."  NHPCO.org. 2005. National Hospice and Palliative Care Organization Caring Connections Program.
www.caringinfo.org

"All About Hospice: A Consumer's Guide." Hospice-america.org. 2005. Hospice Association of America.
www.hospice-america.org

"Hospice Care." PLWC.org. 2005. People Living With Cancer.
www.plwc.org

"What Does Someone Dying Need?" Hospicenet.org. 2005. Hospice Net.
www.hospicenet.org

"The Hospice Choice" MMHospital.org. 2005. Marietta Memorial Hospital.
mmhospital.org

"Knowing What to Expect Helps You Help Your Care Recipient" Caregiving.com. 2005. Caregiving.com.
www.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.
www.dyingwell.org

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What Hospice Care Means for Survivors: Suggestions

The 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

• How long has the hospice organization been established in the community?

• Who owns the hospice?  Is it owned by an individual, a partnership or a corporation?  Is it a for-profit corporation or a nonprofit corporation? 

• Is this hospice organization licensed by the state and certified by Medicare?

• What other accreditation does the organization have?

• What industry quality standards does the organization meet?

Staff

• Who is the medical director and what are his or her credentials?  Is he or she certified in hospice and palliative care?

• What are the credentials of the other staff members?

• How many of the nursing staff are certified in hospice and palliative care?

• What are the credentials of the social workers and chaplains?

• How are home caregivers trained?

Services

• What services are provided by the hospice?

• What services are provided in nursing homes or other residential care facilities?

• At which facilities (hospitals, nursing facilities and other health care settings) does the hospice provide care?

• Does the organization have its own facility for inpatient care?  If not, where does the hospice provide inpatient hospice care?

• Is there 24-hour access to the hospice staff?

• What services are available after hours?

• How often will the hospice staff visit the survivor and caregiver at home?

• What hospice services are not paid for by insurance, Medicare or Medicaid?

Medical Care

• How is the survivor's personal physician involved in hospice care?

• What is the role of the hospice physician?

• Which cancer-fighting treatments can be continued and which must be stopped?

• Is there an RN (registered nurse) on-call 24 hours a day?  Are the on-call RNs certified in hospice and palliative care?

Volunteers

• Are volunteers available to help the family?

• What type of training do volunteers receive?

• What sorts of help do volunteers provide?

Family Support

• How does the hospice organization support the family?

• Are housekeeping services offered?

• How and where is respite care provided?

• How are the emotional and spiritual needs of the survivor and family addressed?

• Describe the bereavement support provided.

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What Hospice Care Means for Survivors: Additional Resources

The 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
• LIVESTRONG SurvivorCare Program
• National Cancer Institute (NCI)
• American Cancer Society

National Hospice and Palliative Care Organization
www.nhpco.org

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.

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LIVESTRONG SurvivorCare Program
www.livestrong.org/survivorcare

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.
 
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National Cancer Institute (NCI)
www.cancer.gov

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.

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American Cancer Society
www.cancer.org

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.

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