What Hospice Care Means for Patients

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.

What Hospice Care Means for Patients: 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 patient 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 patient 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 patients 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, 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 patients 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 patient 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 services generally include:

• 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

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 retirement or board and care home
• An assisted living facility
• A nursing home
• A hospital or an in-patient hospice facility for acute symptom management

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 health care providers 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. You can also call a hospice agency directly and speak to someone in admissions. They can provide information and if appropriate, contact your health care provider.

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 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 health care provider 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 health care provider 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.

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 or hospice in-patient facility. This type of care is used to manage pain or acute 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 a nursing facility for up to five days. This is covered by Medicare, Medicaid and some private insurance policies.

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:

Hospice Professionals	Roles and Responsibilities
Hospice physician	Oversees the plan of care Orders medications Works with the patient's oncologist or primary care provider Provides consultation or primary care when necessary
Hospice registered nurse	Trains caregivers to care for the physical and medical needs of the patient Monitors patient's condition Works with the health care provider to order medications, medical equipment and supplies Provides support
Hospice aides	Assists with personal care needs such as feeding, bathing and grooming
Social worker	Offers emotional support for all involved Links caregivers and families to community resources Assist with practical matters such as completing advance directives and providing information about options for final arrangements.
Chaplain (Pastor, priest, rabbi or other spiritual advisor)	If requested, offers support to patient and loved ones to explore spiritual or faith-based issues Works with patient's clergy, if appropriate, to meet spiritual needs Discusses spiritual questions that may be important during advanced cancer
Volunteers	If requested, can assist the patient and caregivers in a variety of ways including running errands, brief in home respite care and companionship
Grief and bereavement counselor	Provides grief counseling Assists with dealing with any type of loss, including the loss of physical abilities

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: 1-2 times per month or more often as needed
• Chaplain: 1-2 times per month or more often as needed
• Home health aide: 1-3 times a week or more often depending on needs
• Volunteers: A few hours per week as needed by patient or caregivers

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
• Help schedule and participate in patient/family conferences with the care team
• 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
• Assist with 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 in a nursing 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 health care providers to advise them of a patient’s care preferences. They include a Directive to Physicians and Family or Surrogates (sometimes referred to as a Living Will), a Medical Power of Attorney, and an Out-of-Hospital Do-Not-Resuscitate Order which protects a persons wishes outside the hospital setting (similar to a DNR) order a health care provider might write in the medical chart at the hospital). 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 and two witnesses before they are given to the health care team. The Out-of-Hospital DNR Order must also be signed by the patient’s health care provider. 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, the Medical Power of Attorney, or if there is no MPOA, certain family members can make decisions 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 alleviated or made less severe. 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 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.

Both patients and caregivers may experience emotions such as the following 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:

Emotional Challenges	Physical Symptoms to Watch For
Depression	Feeling sad most of the time Loss of interest in life Inability to ever feel happy
Anxiety	Rapid heart rate Palpitations (feeling or hearing your own heart beat) Breathing difficulties Dizziness Restlessness Feeling nervous
Confusion or delirium	Changes in thinking or talking Loss of awareness about surroundings Memory loss Inability to concentrate

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. These may include 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
• Social work services
• Chaplain 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
• 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 doument 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 Patients: 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 patient and caregiver at home?
  • What hospice services are not paid for by insurance, Medicare or Medicaid?
  
  About Medical Care
  
  • How is the patient's personal health care provider 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 patient 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 Patients: Additional Resources

The previous sections of this document provide detailed information, suggestions, and questions to ask related to this topic. This section offers a listing of additional resources that are known to provide support and quality services that may be helpful to patients during the cancer journey.

LIVESTRONG Cancer Navigation Center
www.LIVESTRONG.org/GetHelp

Email:	Cancer.Navigation@LIVESTRONG.org
Phone:	1.855.220.7777 (English and Spanish)
	Navigators are available for calls Monday through Friday, 9 a.m. to 5 p.m. (Central Time). Voicemail is available after hours.

The Navigation Center provides free, confidential one-on-one support to anyone affected by cancer. This is not a medical facility, but rather a center that provides the following support services:

• Emotional Support—assistance coping with a cancer diagnosis, help accessing support groups, as well as peer-to-peer connections
• Fertility Risks and Preservation Options—information on fertility risks and help accessing discounted rates for fertility preservation options
• Insurance, Employment and Financial Concerns—information on employment rights and benefits, financial assistance and debt management, including insurance and billing issues as well as medication co-pay assistance

In addition to professional cancer navigators on staff, LIVESTRONG partners with specialty organizations such as Patient Advocate Foundation, Imerman Angels, Navigate Cancer Foundation and EmergingMed to provide support services.

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. ACS can connect you to support and services 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:	1-703-837-1500
	1-877-658-8896 (Spanish)
	Calls are answered Monday through Friday, 9 a.m.–5 p.m. p.m. (ET).

This organization offers information about pain management, advance directives, care-giving, 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

National Cancer Institute (NCI) — National Institutes of Health
www.cancer.gov

Online:	The LiveHelp online chat service is available Monday through Friday from 8:00 a.m. to 11:00 p.m. Eastern Time.
Email:	Send an email through the website.
Phone:	1-800-422-6237
	Information specialists answer calls Monday–Friday, 8:00 a.m. to 8:00 p.m. Eastern 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 and 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 to quit smoking. They can also help you with using the website and can tell you about NCI’s printed and electronic materials.

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