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.

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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

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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: