What Hospice Care Means for Caregivers

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 those facing end of life. Hospice care can give you the information and support you need to provide the best care for your loved one.

Detailed Information

Suggestions

Additional Resources

Print this Topic

Email this Topic

What Hospice Care Means for Caregivers: 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.

Caregivers who have helped a loved one through the cancer journey understand how cancer changes the lives of everyone it touches. A caregiver goes through the physical and emotional ups and downs of the disease along with their loved one. A caregiver is there to listen, support, encourage, comfort and help in many different ways. As a caregiver, you are vitally important to the one you love.

Hospice care allows a survivor with advanced cancer or other life-limiting illness to spend the remainder of his or her life comfortably and peacefully, surrounded by those they love. This is a very important time for everyone involved.

This document provides an overview of hospice care and is meant specifically for caregivers. It describes common concerns and addresses how these services can be helpful to survivors, their loved ones, and all of the caregivers during advanced cancer.

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 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 the 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 gives patients and their loved ones a chance to make meaningful decisions that are respected. Hospice is not about giving up hope. An important goal is to help the patient to be free of pain to give the patient and his or her loved ones, friends and caregivers peace of mind and acceptance of life as it is.

Some people are afraid to ask about hospice care for themselves or for a loved one. They may believe that choosing hospice care means giving up. However, these programs are not about giving up. Rather, they allow the patient and his or her caregivers to focus time and energy on quality of life.

A hospice organization provides care through a team of professionals and volunteers who work closely with the patient and all of the caregivers and loved ones who want to be a part of this experience. Hospice care workers are trained to support the physical, emotional, spiritual and practical needs of all those who are supporting loved ones at the end of life.

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

Hospice care services 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

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 is no longer treatable and that additional therapies will not provide any benefit
• Live expectancy may be six months or less
• A physical decline and exhaustion are likely to 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 define what options are available.

Sometimes the patient is ready to consider hospice care before his or her loved ones are. In other cases, the family may want to start services. Often, the decision is made together by the patient and his or her loved ones. If you are struggling with the decision about hospice care, talk to a health care provider, 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 this decision unless he or she is unable to communicate. However, if a patient cannot communicate his or her wishes, a spouse or other family member may be asked to decide. 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.

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.

How does hospice care work?

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

Hospice services can 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

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 your loved one’s condition and symptom management. They also help you and other 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 in another care setting.
  
• 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 very advanced cases, the majority of hospice care is provided at home though the patient or loved ones choose that death occur somewhere else. Though this is likely to be a very difficult subject to discuss, it may be best to make a decision like this early enough so that everyone is comfortable with what occurs during the final days and hours.

Who are the professionals that provide hospice services?

Hospice care is a team effort. Caregivers work with trained health care professionals who will assist with the care of the patient as they guide the patient and his or her loved ones through the hospice care. The following table provides an overview of hospice professionals and their roles.

Who should consider being a caregiver during advanced cancer?

Becoming a home caregiver for someone who may be dying can come suddenly or after many years of battling cancer. Caregiving can be extremely rewarding, but also very demanding. Take time to look within yourself and think about your personal strengths and limitations.

Caregiving is a 24-hour-a-day, 7-day-a-week job. As a caregiver, asking for and accepting assistance from others may be hard to do—but it will probably be needed. Keep in mind that you will be giving others the opportunity to serve and feel good about themselves for doing so.

Talk with reliable family members, loved ones and friends about specific tasks and when and how they can help. Develop a schedule and contact list of those helpers you trust. Keep track of all the information necessary to stay in touch with these helpers.

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 helpful. However, caregiving can be very demanding at times, so you may have to take time off from your job at some point.

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 companies are required to offer this benefit, so discuss the FMLA with your employer.

You can also talk with your employer about caregiving demands and how you can meet them through changes at work such as:

• Flexible hours, schedule changes or working from home
• Vacation and sick leave time you have available

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

Caregivers and loved ones are a vital part of the hospice team. The hospice staff will be there every step of the way to help provide this care.

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. 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 do not understand something, keep asking questions until you completely understand.

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 to address symptoms or issues that develop. Be sure you keep the 24-hour emergency number for hospice in a visible place for all caregivers and loved ones.

Loved ones and caregivers work with the hospice staff to keep the patient as comfortable as possible. The hospice personnel may help set up a space in the home for ease of care. They arrange for equipment and supplies that are needed to care for the patient 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

A caregiver will usually be responsible for keeping track of many kinds of information. This includes setting up and maintaining a recordkeeping and organizing system that will help to make life as a caregiver easier. Some people are able to organize all of these tasks and schedules by themselves, but many people need help. Hospice staff can help assist to set up an organizational system that will work for you.

Serving as a caregiver during hospice care can be a very loving and fulfilling experience. Many who have worked with hospice programs describe the experience as the most meaningful and rewarding work they could have done.

However, there may also be unexpected challenges that come with this experience.

Caregiving for a loved one who is dying can be very different than caring for someone who has a chronic (ongoing) illness. A patient with advanced cancer usually has a variety of symptoms that caregivers try to manage, and care needs will probably increase slowly over time. Caregivers must take care of themselves or they will not be able to care for the patient when he or she may need the most care.

Some ways to make caregiving easier include:

• Asking for help with anything and everything
• Keeping a baby monitor near your bed to better hear if your loved one needs anything while you are resting
• Appointing one person to keep loved ones and friends informed
• Developing a back-up plan in the event caregiving becomes overwhelming

What are the responsibilities of a caregiver during advanced cancer?

Hospice staff can be called 24 hours a day to answer questions. They are also available to make in-home visits at any time of the day or night to address pain or other issues that might develop. The hospice team will work with the patient and family to create a care plan that is based on specific needs. The care plan includes a schedule of visits from the hospice team members, and it will be changed as needs change. Many memories are created during the hospice journey. Keep this in mind as plans are made for end-of-life care.

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
• Hospice aide: 1-3 times a week or more often depending on needs
• Volunteers: Several hours per week as needed by patient or caregivers

Every caregiving experience is unique. However, caregivers may be required to provide a variety of care tasks including:

Physical care

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 does not pay for such private care, so these are out-of-pocket expenses for the survivor and/or family.

If possible, find people to perform different tasks that the patient is comfortable with. Also, talk with family members and friends to determine who is comfortable performing tasks such as:

• Organizing and giving medication
• Monitoring symptoms and discussing treatments with your loved one and hospice staff
• Providing assistance with personal care such as transferring the patient, bathing, feeding and grooming

Emotional care

• Listening, talking, reading or playing music
• Providing kind and loving companionship

Practical care

• Handling insurance and other legal matters
• Taking care of financial concerns such as paying bills
• Coordinating visits with loved ones, friends and hospice staff
• Discussing and recording the patient’s last wishes
• Ensuring that wishes are carried out if you are also the health care power of attorney

What types of assistance are available from hospice programs?

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

The hospice staff will provide information about things to do to keep the patient comfortable. Needs will change over time, and hospice will help you understand and watch for these changes. If you have any questions, you can contact a member of the hospice staff at any time.

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
• Assisting with funeral arrangements

Caregivers also 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 (at a nursing facility or other residential care facility) during respite care for the main caregiver. During this time, the caregiver can visit the patient. Talk with the hospice staff as soon as possible about arranging for this type of break because respite care may not be available immediately.

Why are advance directives important for hospice patients?

Advance directives 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 of 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 care, certain family members can complete 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?

As a loved one’s illness progresses, caregivers may spend a lot of time and energy trying to manage symptoms that keep changing. 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. 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 observing and discussing changes with the hospice staff while working to relieve physical discomfort the patient may have.

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.

The hospice nurse will advise about what symptoms to track and discuss with the hospice staff. Use a notebook to write down and describe in detail such things as symptom changes, including different levels of pain, new symptoms, responses to treatments and other changes as instructed by hospice staff. 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

What types of emotional and spiritual support are available to caregivers?

Being a caregiver can affect you both physically and emotionally. You may have trouble sleeping, which can lead to fatigue. The fatigue, in turn, can make negative feelings worse and even result in your own depression. Caregivers or loved ones who become emotionally overwhelmed may be helped by the hospice social worker or by a referral to a therapist.

Patients and their loved ones are welcome to talk about how you are feeling with the hospice nurse, social worker and chaplain. Because caregiving is such a big job, caregivers need to take care of themselves to avoid becoming exhausted. 

In some cases, home care may not be possible. 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. Take care of yourself during this time, and try to avoid worrying about what you think you should do--or what other people might expect you to do.

What emotions are common for loved ones and caregivers?

When hospice care is started, many caregivers and loved ones feel overwhelmed by the fact that the end of life may be near for someone they love. There may be many types of emotions, both expected and unexpected, that come and go unexpectedly. Over time, there may be a realization that the patient is not going to get better despite your best care. This may bring feelings of frustration, anger, sadness, grief and loss.

During advanced cancer, the final months, weeks and days are likely to be very emotional for everyone. Some people are able to use their remaining time together to grow closer. They celebrate the life they have shared by talking, laughing, telling stories and being open about their feelings--perhaps as never before. Everyone deals with dying and death differently. There is no wrong or right way.

As you deal with advanced cancer, it is important to allow yourself to express your sadness, grief and acceptance with your loved ones and others you trust. These types of symptoms are common and part of the process that both the patient and caregivers go through.

The following emotions are common to those dealing with advanced cancer:

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

It is very difficult to determine what another person is thinking or feeling. However, most emotional changes are accompanied by physical changes that should be watched for and discussed with the hospice staff, including:

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 keep the patient as comfortable as possible

Ignoring 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, or an oncology social worker or other counselor.

Caring for a loved one who is nearing death can be an important time of growth for caregivers. It may also help with the grieving process after death. The experience can bring a deep sense of joy and satisfaction in having helped to make a loved one’s last days happier and more peaceful. 

The final phase of your loved one’s cancer journey may be the most intense experience of your life. As a caregiver, you have provided a very loving gift by making sure that the person you love dies with peace and dignity.

Hospice provides families and loved ones with bereavement support free of charge for one year after a death. During this time, the program may stay in touch through letters and phone calls on a regular basis. Many hospices offer grief support groups and some offer individual counseling. Some hospice programs offer special memorial services for those who have lost loved ones.

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 pay very little, and often nothing, for this end-of-life 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 provided by the facility.

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
• Hospice 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

Insurers that provide a hospice benefit include:

• 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 or qualify for any form of health insurance, 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. 

If outside help is hired, such as home health aides, prepare a list of duties so the workers will know exactly what you expect of each of them. Hospice does not pay for the services of private professionals that you hire.

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.
www.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

[return to top]

What Hospice Care Means for Caregivers: 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.

Things to consider before becoming a caregiver:

The hospice staff visits the home only several hours a week. You will be responsible for your loved one’s care for the rest of the time. Be sure you are able and willing to provide this care.

Ask yourself the following questions:

• Are you physically strong enough to lift and move your loved one? 
• Do you have any health issues that may limit you?
• Can you take care of your personal and family needs at the same time?
• Can you afford to take time off from work if it is necessary?
• Do you want to provide end-of-life care at home?
• Can you handle being a caregiver for several months?
• Do you and your loved one want death to occur at home or somewhere else?
• Does everyone involved in caregiving understand how decisions will be carried out?
• Do you have family members and loved ones who are willing to help you?

How to find a hospice provider:

What Hospice Care Means for Caregivers: 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.

As a caregiver who has helped a loved one live with cancer, you understand how cancer changes lives. You have gone through the physical and emotional ups and downs of the disease along with your loved one. You have been there to listen and help your loved one find the best treatment options. You have offered encouragement, comfort and help in many different ways. As a caregiver, you are vitally important to the one you love.

When a cure can no longer be expected, the focus of care becomes making your parent, spouse, partner, family member or friend as comfortable as possible. The goal of hospice care is to enhance the quality of life during the final months and weeks of life. Family members, loved ones or hired caregivers give most of this care at home, with the guidance and help of hospice professionals and volunteers.

Hospice care allows people with advanced cancer and other life-limiting illnesses to spend the remainder of their lives comfortably and peacefully, surrounded by those they love. This is precious time for everyone. As the most compassionate, comprehensive and family-centered end-of-life care available, hospice provides:

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

These services are delivered by a team of specially trained health care professionals who work with the survivor's family and loved ones to ease the dying process. 

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 gives survivors and their loved ones a chance 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 that your loved one is free of pain and peaceful and that family, loved ones, friends and caring health professionals are there to support you. You can hope to find peace and acceptance in your life as it is in any moment.

Caregiving

Caregiving can be a very loving and fulfilling experience, and many people who have served as a caregiver with the help of hospice describe this experience as the most meaningful and rewarding thing they could have done. There are often unexpected challenges in this experience, however. This document mentions some of the challenges caregivers and survivors may face, as well as some strategies for managing the tasks involved. With this information you and your loved one can more thoughtfully talk about how to plan and prepare for caregiving.

Sometimes, learning about these issues can be upsetting. But having this information will help you and your loved one 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 caregiver, even though the topic may not relate to the current needs or condition of your loved one. This document discusses the role of caregivers who are providing care in a home setting. The terms "family" and "loved ones" are used to mean all of the people that care about the survivor, including relatives, spouses, partners and friends. The term "caregiver" is used to mean whoever is providing most of a survivor's 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 survivor's point of view can be found in the list of Practical Topics.

What you will learn from this document

This document explains how hospice helps survivors, their caregivers and families at the end of life.

There are 10 major sections. Each section answers questions about how hospice care works, what caregivers do and how hospice supports the whole family. Included are descriptions of the following:

1. Overview of hospice care
2. Caregiver roles and responsibilities
3. Caregiver planning
4. Caregiver organization tips
5. End-of-life comfort care
6. Medical and physical care
7. Emotional and spiritual care
8. Practical care
9. Self-care for caregivers
10. The caregiving experience

Who is this document for?

Anyone who cares for a cancer survivor may find this information useful. However, this document answers questions about how caregivers care for survivors who are facing the end of life.  The information focuses on the relationship between survivors and their caregivers who are family members, spouses, partners and friends.

Survivors, family 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 your loved one is facing end of life, or if you do not yet know what your loved one's 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

What is 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.

Hospice care includes palliative care, an approach that emphasizes your loved one's total well-being and that of caregivers and family as well. 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 you, the survivor, and all of the caregivers and loved ones who want to be a part of this experience. Hospice care workers are trained in supporting the physical, emotional, spiritual and practical needs of all those who are supporting 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 home of the survivor, caregiver, partner, friend or other family member
• a hospice facility
• a retirement home
• a board and care home
• an assisted living facility
• a nursing facility
• a hospital

Does choosing hospice mean survivors are giving up hope?

No, hospice does not take away hope - quite the opposite.  Hospice can help your loved one find hope for new things, like getting the care he or she deserves, finding relief from pain or being able to spend time with family and friends. When death appears inevitable, time becomes extremely precious. Your loved one has a choice about how to spend the remaining time.

Hospice makes survivors as comfortable as possible while supporting them in doing those things that are most important and meaningful to them.

When should hospice be discussed, and who brings up the subject?

Hospice can be discussed at any time. Usually, the discussion about hospice takes place when one of the following situations occurs:

• Your loved one learns that his or her cancer is not treatable and that additional therapies will not provide any benefit.
• Your loved one is told by a physician that they have six months or less to live.
• Your loved one is exhausted and declining physically.
• Your loved one decides to discontinue treatment.

Your loved one may ask about hospice first, or a partner, family member, doctor, nurse or social worker may bring up hospice as a possible option. Many physicians hesitate to talk about hospice because they do not want patients to think they are giving up on treating them.

If you think that hospice care should be considered but are not sure how to start this conversation with your loved one, then talk to a member of your loved one's health care team, a social worker, hospice care provider or another trusted professional. There are people who can help you and your loved one understand what options are available.

Remember that choosing hospice care does not mean that you have "given up," but rather that you and your loved one have chosen to focus your energies on 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. Caregivers or family members may suggest that the survivor continue with possible treatment options. Or, the situation may be reversed. A caregiver or family member may recommend hospice as an option before the survivor is ready. Or, a survivor may simply choose not to use hospice.

Your loved one will make the final decision, unless he or she is unable to communicate. Survivors and their families and loved ones can make this decision together. Sometimes a spouse or family must make the decision if the survivor is unable to express his or her wishes.

If you are struggling with your loved one's decision about hospice care, then talk to a health care provider, social worker or mental health professional about your feelings and concerns.

How is hospice care initiated?

A physician must sign a "referring order" to hospice, which certifies that life expectancy is six months or less if the cancer runs its likely 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.

Your loved one's health care team or a 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 different needs and lifestyles.

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 loved one's condition and symptom management. They also help you and other caregivers learn how to provide day-to-day care. Staff can explain what is happening and help you and your loved one plan ahead.
• In-home crisis care (called continuous care) is short-term in-home care that is available when symptoms cannot be managed by the 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 loved one's needs, your loved one 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 your loved one make arrangements for continued care if needed.
• Respite care provides time for you and other home caregivers to rest while your loved one is cared for in an inpatient setting or nursing facility for up to five days.

Sometimes the majority of hospice care is provided at home, but you and your loved one may prefer that death occur somewhere else. These choices, though very difficult, should be discussed 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?

Hospice care is a team effort. You will work with trained health care professionals who will care for your loved one as they guide you throughout the hospice journey.

*Note: "Chaplain" is the term used to describe a professional who is trained to discuss spiritual questions that often become important at the end of life. Hospice chaplains do not promote any particular religion or belief system.

How do families and loved ones provide hospice care at home?

You and the hospice staff work together to keep your loved one as comfortable as possible. The staff will help you set up a space in the home where care is easiest to give. Hospice arranges for all equipment and supplies that are related to your loved one's diagnosis. The equipment and supplies are provided as they are needed and may include:

• hospital bed
• oxygen
• bedside commode (toilet)
• over-the-bed table
• shower chair
• wheelchair
• treatment supplies such as bandages, syringes, sponges, catheters and surgical gloves

2. Caregiver Roles and Responsibilities

Caregiving for a loved one who is dying may be very different than caring for someone who has a chronic (ongoing) illness. A person living with advanced cancer usually has a variety of symptoms that caregivers try to manage. The needs of your loved one in hospice will probably increase slowly over time. Each survivor's experience will be different.  You and other caregivers may provide:

Physical care

• organizing and giving medication
• monitoring symptoms and discussing treatments with your loved one and hospice staff
• providing assistance with personal care

Emotional care

• listening, talking, reading or playing music
• providing companionship and love

Practical care

• handling insurance and other financial matters
• paying bills
• coordinating visits from family, loved ones, friends and hospice staff
• discussing and making sure your loved one's last wishes are carried out if you are also the health care power of attorney

How does hospice help caregivers?

The hospice staff and volunteers are just a phone call away 24 hours a day to answer questions. Together with you and your loved one, the hospice team will create a care plan that is based on your loved one's specific needs.  The care plan includes visits from the hospice team members and will be changed as your loved one's needs change.  An example of scheduled visits may look something like this:

• Registered nurse: once or twice a week or more often as needed
• Social worker: once a month or more often as needed
• Chaplain: once a month or more often as needed
• Home health aide:  one to three times a week or more often depending on your loved one's needs
• Volunteers: several hours a week as needed by you or other caregivers

3. Caregiver Planning

Becoming a home caregiver for someone who is dying may come suddenly or after many years of battling cancer. Take time to look within yourself and think about your personal strengths and limitations. Caregiving is extremely rewarding, but also very demanding. Do not neglect your own self-care, or you will not be able to care for your loved one when he or she may need you the most.

Hospice care is flexible and can meet the needs of most individuals and families. However, home caregiving is not always possible. Try to be clear in your own mind and with other family members and loved ones about what you are able to do and what you want to do. Then plan for what you think is best for everyone involved without worrying about what other people might expect you to do. 

During the hospice journey, you are creating memories - the last memories you will have of your loved one. Keep this in mind as you plan for end-of-life care.

What are advance directives and why are they important?

Advance directives give survivors the control and legal ability to state exactly how they want to be cared for and who they want to make decisions for them if they become unable to communicate their wishes. When survivors are no longer able to discuss medical options with their health care team or their families, advance directives make their wishes known and specify the types of medical support they 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 the survivor's request and must be signed by the survivor before they are given to physicians. The survivor decides what provisions will be included in each document. However, if the survivor is incapacitated and not able to clearly communicate his or her wishes when hospice care is needed, then certain family members can prepare these documents on the survivor's behalf. 

A "Do Not Resuscitate" (DNR) order is an advance directive 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 the survivor's physician can arrange a discussion of the benefits and risks of CPR and a DNR order so that an informed decision can be made.

Hospice professionals support survivors' rights to make their own decisions.  Survivors do not have to have a DNR order to receive hospice services.  If a survivor wants to have a DNR order, hospice staff can help make the necessary arrangements.

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

What do caregivers need to think about as they consider hospice care?

Ask yourself the following questions and answer them honestly. 

• Are you physically strong enough to lift and move your loved one?  Do you have family or friends who can help you with this task?
• Do you have any health issues that may limit you?
• Can you take care of your personal and family needs at the same time?
• Can you afford to take time off from work if necessary?
• Do you want to provide end-of-life care at home?
• Could you handle being a caregiver for several months?
• Do you and your loved one want death to occur at home or somewhere else? Does everyone involved in caregiving understand how this decision will be carried out?
• Do you have family members and loved ones who are willing to help you?

The hospice staff visits the home only several hours a week. You will be responsible for your loved one's care for the rest of the time.  Be sure you are able and willing to provide this care.

How does the hospice staff help caregivers prepare?  

The hospice staff will prepare, train, guide and support you as a caregiver throughout the hospice journey.

The hospice nurse will teach you to:

• monitor your loved one's symptoms
• safely lift and move your loved one if appropriate
• safely operate medical equipment that may be used
• organize and give medications
• provide personal care
• understand what is happening when changes occur and plan ahead

The social worker will help you:

• get organized for providing care
• find community support resources
• talk about how you are feeling, if you want to
• plan for the future

The chaplain, if requested, will help you and other loved ones:

• address and talk about spiritual and/or faith-based issues

The volunteer, if requested, will:

• offer companionship and give you a break from providing care

The home health aide will:

• offer you a break from providing care (respite care)
• assist with the survivor's personal needs

The homemaker will:

• assist with light housekeeping

Do caregivers have to stop working?

Caregiving does require a time commitment, and 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 helpful. However, caregiving can be very demanding at times, so you may have to take time off from your job at some point. Talk with your employer about:

• flexible hours, schedule changes or working from home
• vacation and/or sick leave time you have available

Serving as a home hospice caregiver is covered by the Family Medical Leave Act, which protects an individual's job standing and benefits during unpaid leave of up to 12 weeks. Not all companies qualify for this benefit, so talk to your employer.

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
• 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 to help you, your family and other 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 your loved one does 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, the survivor is 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 or nursing facility

4. Caregiver Organization Tips

As a caregiver, you will be keeping track of many kinds of information.  Setting up and maintaining an organization system that works for you will make your life as a caregiver much easier. Some people are able to organize all of these tasks and schedules by themselves, but many people need help. Hospice staff can help you set up an organizational system that will work for you. Or, you can ask a trusted family member or friend for help.

For additional ideas on how to keep organized as a caregiver, see the Suggestions document.

Other than the hospice staff, who can help caregivers?

Caregiving is a 24-hour-a-day, 7-day-a-week job. You will probably need help.  Asking for and accepting assistance may be hard for you, but you will be giving other loved ones the opportunity to serve and feel good about themselves for doing so. Talk to family members, loved ones and friends about when and how they can help.  Give them specific tasks to do.

Make a list of helpers you can call on, people you trust and who are reliable. Talk with these people and tell them what you need. Write down all the information necessary to stay in touch with your helpers. Here is an example of a chart you can create:

Include on this list:

• family members
• friends (your friends and your loved one's)
• neighbors
• community and hospice volunteers
• people from your faith community
• paid professionals
  

Make up a weekly schedule of when your helpers will be available to assist you.

If you hire outside help, such as home health aides, write a list of duties so the individuals will know exactly what you expect of them. Hospice does not pay for the services of private professionals you hire.

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

Remember, you are a vital part of the team. Your day-to-day care is essential to good hospice care. The hospice staff will be with you every step of the way to help you provide this care. Here are tips for working together well:

• Create a notebook to keep 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.  These details help your team find the best solutions.
• Always feel free to ask questions and seek help from the hospice staff.
• If you do not understand something, keep asking questions until you do understand completely.

You should expect the hospice staff to listen to you respectfully and respond quickly at any hour of the day or night.  A 24-hour emergency number will be given to you.  Be sure you have the 24-hour emergency number for hospice in an obvious and visible place.

5. End-of-Life Comfort Care

The hospice staff will give you information about things you can do to keep your loved one comfortable. Your loved one's needs will change over time, and hospice will help you understand and anticipate these changes. If you have any questions, you can contact a member of the hospice staff 24 hours a day.

For more information on providing end-of-life comfort care, see the Suggestions document.

6. Medical and Physical Care

As a caregiver, you will be doing many things to keep your loved one physically comfortable.

What types of physical care do caregivers provide loved ones?

As your loved one's illness progresses, you may spend a lot of time and energy trying to manage symptoms that keep changing. 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.

Different medications, often given around the clock, are used to relieve these symptoms. Sometimes, treating one symptom can cause others to appear, so you will be observing and discussing changes with the hospice staff as you work to relieve any physical discomfort your loved one may have.

Remember that all difficult symptoms can be relieved either somewhat or completely, so be sure to ask your hospice team for help.

How do caregivers help in managing pain?

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).  The nurse will show you how to give medications using these options.
• Breathing and relaxation exercises may also be used when appropriate.

What do caregivers need to track and report to the hospice staff?

The nurse will tell you what you need to track and discuss with the hospice staff. Use your notebook to write down and describe in detail such things as symptom changes, including different levels of pain, new symptoms, responses to treatments and other changes as instructed by hospice staff.

What is involved with personal care?

As a caregiver, you will provide most of the personal care with the support of home health aides who may visit your home one to three times a week, depending on the need.

Personal care involves assisting with all activities of daily living, including eating, dressing, bathing, toileting and other needs. It is likely that your loved one will eventually be unable to move without assistance, and you or other caregivers will need to help your loved one change positions in bed or move around the room. You should take care to protect your own health at all times, and if any of these tasks are too physically demanding for you, ask for help.

If possible, ask your loved one to choose the people to perform different tasks.  Ask your loved one who he or she is comfortable with.  Also, talk with family members and friends to determine who is comfortable performing these tasks. 

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 does not pay for such private care, so these are out-of-pocket expenses.

7. Emotional and Spiritual Care

You, your loved one and the family will probably experience a full range of emotions as death draws near.

What emotions can loved ones expect to feel?

In the beginning, you may know that it is time for hospice care, but still feel a little overwhelmed that end of life is near.  Both you and your loved one may be experiencing many types of emotions both expected and unexpected.  Fear, anger, guilt, peacefulness, acceptance or any other emotion may come and go unexpectedly.

Over time, you will realize that your loved one is not going to get better, despite your best care. You may feel frustrated as well as sad that you are losing the person you love.

The final months, weeks and days can be very emotional for everyone. Some people are able to use their remaining time together to grow closer. They celebrate the life they have shared by talking, laughing, telling stories and being open about their feelings, perhaps as never before. Everyone deals with dying and death differently. There is no wrong or right way.

You and other 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
• Grief and tremendous sadness
• Relief that the pain and suffering have been eased or that they are nearly over
• Peace and acceptance
  

Allow yourself to express your sadness, grief and acceptance with your loved one and others you trust.

What are common end-of-life emotional symptoms?

Knowing what a person is thinking or feeling is very difficult to determine. However, most emotional changes are accompanied by physical changes that you need to watch for and discuss with the hospice staff, including:

Poor pain management can lead to or worsen emotional issues. Medications can also cause these issues. The hospice nurse will help you understand what you can do to keep your loved one as comfortable as possible.  Some symptoms, such as sadness, are common and can be part of the process that your loved one goes through.

Caregiving can affect you both physically and emotionally. You may have trouble sleeping, which can lead to fatigue. The fatigue, in turn, can make negative feelings worse and even result in your own depression. Caregivers or loved ones who become emotionally overwhelmed may be helped by the hospice social worker or by a referral to a therapist.

What emotional and spiritual support do families and caregivers need?

You and other loved ones will be invited and are welcome to talk about how you are feeling with the hospice nurse, social worker and chaplain.

Because caregiving is such a big job, you need to take care of yourself, otherwise you may become exhausted.  You may choose to share your experiences and talk openly and honestly to someone other than your loved one. Keeping your feelings to yourself can be harmful, while expressing and sharing them can be freeing for you. Find someone you can talk with and cry with, someone who will just listen and not judge you for how you are feeling.  All caregivers are different, so do what is right for you.  Trust yourself to know what you need.

You may also want to continue your own spiritual practices and routines and talk with the hospice chaplain, your own spiritual advisor, or your social worker about your personal questions.

How do hospice organizations help families with grief and loss?

Hospice provides families and loved ones with bereavement support free of charge for one year after a death. You will receive letters and phone calls on a regular basis during this time. Many hospices have grief support groups, and some offer individual counseling. Some hospices hold memorial services to remember those who have been served. Special services are sometimes available for children and friends who have lost loved ones.

8. Practical Care

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

In addition to emotional support, your social worker helps with many practical concerns by:

• 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 you, other caregivers and family to community resources
• arranging for respite care that gives you and other caregivers time off
• contacting friends and relatives
• assisting with funeral arrangements
  

The social worker is particularly sensitive to your needs as a caregiver and will offer help without intruding on your privacy.

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
• perform light housekeeping duties
• sit with your loved one while you take time off

What other types of practical matters should be discussed?

Discussing such things as funeral or memorial services can be extremely difficult. Some people facing end of life want to talk about these arrangements and have an opportunity to say what music, rituals or readings would be most meaningful to them. Others, however, are not comfortable discussing these things and prefer to leave all decisions to their loved ones.

Hospice staff, social workers and faith-based advisors are available to talk to you and your loved one and find out whether a discussion about funeral or memorial planning is wanted. If the survivor does not want to discuss such plans, then respect his or her feelings. You and other loved ones can make appropriate arrangements when the time comes. 

Also, make sure that you know the location of important legal or financial documents that will be needed to make funeral arrangements or settle the estate. If you do not know where these documents are stored and are concerned that asking about them will upset your loved one, then ask if a hospice staff member or social worker can talk to your loved one on your behalf.

What can caregivers do to make caring for their loved one easier?

There are a number of things you can do to make your job easier:

• Ask for help with anything and everything.
• Buy or borrow a baby monitor to keep near your bed so you can hear if your loved one needs anything while you are resting.
• Appoint one person to stay in touch with loved ones and friends about your loved one's condition. Emailing can also make communicating with many people easier and faster.
• Have a back-up plan in the event caregiving becomes too much for you. Even if you never have to use the back-up plan, knowing there are other options will be helpful to you.

9. Self-Care For Caregivers

Taking care of yourself is very important. If you do not care for yourself, you will not be able to care for your loved one. Self-care helps you remain physically, mentally and emotionally able to care for your loved one.

What is respite care?

Caregivers need breaks to avoid physical and emotional exhaustion. Respite care relieves caregivers for up to five days per month. Hospice benefits pay for your loved one to be cared for outside the home (at a hospice facility or other residential care facility) while you rest and focus on yourself and your own life. You can visit your loved one at any time during this period of respite care. Talk with hospice staff about arranging for respite. Try to plan ahead because respite care may not be available immediately.

For more information on how you can take care of yourself while caring for your loved one, see the Suggestions document.

Where are hospice organizations located?

Most communities have more than one hospice organization.  Ask your health care team to refer you to hospice organizations in your area.    

The Suggestions document provides more information on finding and talking with hospice organizations about the specific services they provide.

10. The Caregiving Experience

The final phase of your loved one's cancer journey may be the most intense experience of your life. You are providing a very loving gift by making sure that the person you love dies with peace and dignity.

Many caregivers say that caring for a loved one nearing death was an important time of growth for them personally.  Providing care for loved ones in this way may also help with the grieving process after death. The experience often brings a great sense of joy and satisfaction in having helped to make a loved one's last days happier and more peaceful. 

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

Print this Topic

Email this story

What Hospice Care Means for Caregivers: 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.

Caregiver Organization Tips

As a caregiver, you will need to keep track of many types of information. Hospice staff will help you develop an organization system that works for you. Here are some ideas that may help you get started.

• Have 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 to you.

• When you talk with the hospice staff, take notes so you can refer to the information you receive at a later time.

• Have 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.

• Keep supplies within easy reach of where you will be using them.

• If there is a Do Not Resuscitate order, put it in a visible place that anyone in the house can easily see.

• 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
  • your cell phone number, work number and other numbers to reach you
  • emergency contact if you are away from the home and can not be reached
  • pharmacy
  • family members and friends who can help you
  • individuals other than yourself who can make medical decisions, if there are any

End-of-Life Comfort Care

Here are some things you can do to keep your loved one comfortable. The hospice staff can provide more information to you about providing physical care and emotional support.

• Let your loved one make decisions about food, activities and visitors.
• Ask what kind of lighting he or she prefers.
• Ask what music your loved one likes.
• Ask if you can read aloud books that your loved one enjoys.
• Sit in silence together.
• Make sure your hands are warm before giving a bath.
• Gently massage your loved one's hands and feet.
• Let your loved one know you will listen to anything he or she wants to talk about, even if those topics are difficult for you.
• Ask your loved one what he or she prefers to eat.  Ask about having family meals together.  Even if your loved one has no appetite, he or she may still appreciate the company.  Or your loved one may find that the sight and smell of others' food is nauseating.
• If you become frustrated, leave the room for a moment to calm yourself.

Here are things you can do when your loved one is no longer able to communicate:

• Keep the light low with blinds or soft lighting.
• Play soothing music that your loved one likes.
• Read aloud books that your loved one enjoys.
• Sit in silence together.
• Make sure your hands are warm before giving a bath.
• Gently massage your loved one's hands and feet.
• Provide excellent mouth care for your loved one.
• Remember that your loved one will probably be able to hear until the end, so talk to not about your loved one.

Self-Care for Caregivers

While you are taking care of your loved one, you will need to take care of yourself as well. If you become physically or emotionally exhausted, you will be less able to help your loved one. Here are some ideas for taking care of yourself:

• Make sure you get enough rest. Fatigue is the number one enemy of caregivers.
• Arrange for someone to stay with your loved one while you nap or sleep.
• Maintain a healthy, balanced diet.
• Continue to take your own medications and visit your own health care providers.
• Set aside some time for yourself everyday to read, take a walk, have lunch with friends or just relax.
• Save time and energy by asking someone to keep friends and family up-to-date on your loved one's condition.
• Try to balance your caregiving with the rest of your life, including work and social activities.
• Do not isolate yourself. Stay in touch with people and try to get out of the house at least once a day to be around others.
• Let some things go, such as housework.
• Talk to the hospice staff, friends and your own spiritual advisors about how you are feeling and what this experience is like for you.
• Find and take advantage of opportunities to share, laugh and remember.
• Express your feelings.
• Let your loved one have time alone, if requested.
• Talk to your social worker or a counselor if you start to feel overwhelmed or depressed.
• Participate in online support groups to learn how others have handled caregiving.
• Engage in spiritual activities you enjoy.
• Schedule respite care.
• Be as patient and compassionate with yourself as you are with your loved ones

Print this Topic

Email this story

What Hospice Care Means for Caregivers: 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.

 Return to top

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.
 
 Return to top

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.

 Return to top

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.

 Return to top

Print this Topic

Email this story