Quality of Life and Palliative Care

Palliative care is any type of care that is meant to relieve the symptoms or problems caused by cancer or other diseases.  Although this type of care was once more commonly associated with end of life, the goal of palliative care is to relieve physical, emotional and practical concerns at all stages of illness.  Understanding what palliative care is and how you can get this type of care can help you improve your quality of life at any stage of survivorship.

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Quality of Life and Palliative Care: 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.

Life during and after cancer-fighting treatment may require ongoing care and attention to help you feel your best in every area of your life. In the health care community, care focused on your comfort and quality of life is known as palliative care and focuses on your total well-being.

The word palliative (pronounced PAL-yah-tiv) is used to describe care that is meant to relieve the symptoms of a disease rather than to cure it.  You can receive palliative care at the same time you receive cancer-fighting treatments or at any time after a cancer diagnosis.  (Cancer-fighting treatments are designed to cure or control cancer.)

Palliative care addresses, respects and treats all of your physical, emotional, social, spiritual and financial needs from the time of diagnosis throughout the end of your life.  This document will describe palliative care in terms of improving your overall quality of life.  The information will help you:

• Understand what palliative care is
• Learn about some of the types of palliative care that are available
• Identify professionals and organizations who provide various kinds of care you may need now or in the future
• Learn how you can talk with your health care team and find the care you need
• Be active in asking for the help you deserve in all areas of your life
  

Who is this document for?

This document discusses palliative care as it relates to survivors at any stage of living with cancer. Survivors receiving cancer-fighting treatment may need help managing adverse effects of the treatments. Managing these adverse effects through good palliative care may enable survivors to fight their cancer more effectively. After cancer-fighting treatment, survivors may need help in managing late effects and long-term effects of cancer and cancer treatments known as aftereffects. These aftereffects include any type of physical, emotional or practical concern. Practical concerns include many areas, such as legal and financial matters, transportation and employment to name just a few.

This audience includes:

• Survivors seeking or receiving cancer-fighting treatment
• Survivors who have recently completed treatment. These survivors may be cancer-free, or they may still have signs of the disease
• Survivors who finished treatment years ago
• Survivors who are experiencing cancer as a chronic (ongoing) illness
• Survivors who are participating in clinical trials to evaluate either cancer-fighting treatments or quality of life issues (for example, the effects of exercise for reducing fatigue)
• Survivors of cancers that are likely to recur
• Survivors who have advanced cancer and are approaching end of life

Other audiences that may benefit from this information include:

• Professional and family caregivers
• Family members and friends of cancer survivors
• Health care professionals who provide care for survivors

For some, talking about palliative care as it relates to emotional and practical concerns as well as physical concerns may be a new experience. Survivors often rely on family and friends to help them through the many challenges they may face during and after cancer-fighting treatment. The information presented here can help survivors talk with their family and friends about what they need.

Anyone who is facing a life-threatening or ongoing illness may find this information useful. Those facing advanced cancer and possible end of life in the near future will have special concerns and needs that are not covered here completely. The Additional Resources document for this topic provides a list of organizations that can help with these special concerns.

What is palliative care?

Palliative care focuses on preventing, treating, reducing or removing discomfort whenever and however it appears. The quality of your life is given more importance than focusing only on how long you live.

Your personal satisfaction with how you feel and live defines the quality of your life. Caring for yourself and getting the help you need for any concern you have will help you create a high quality of life.

The National Consensus Project for Quality Palliative Care has created a set of accepted professional guidelines that define palliative care and provide guidance to health care professionals on providing quality palliative care services. The guidelines describe palliative care in the following ways.

The purpose of palliative care is to:

• Relieve suffering and provide support for survivors to enjoy the best possible quality of life at all stages of living with cancer
• Prevent, evaluate and treat pain and other physical, emotional and spiritual concerns
• Focus on comfort and the quality of life rather than cure
• Put survivors and their families first, addressing and respecting individual needs and wishes. This is called "patient and family centered" care.
• Be an active partnership between survivors and their health care teams to deliver coordinated care that addresses a survivor's total well-being
• Be a method for guiding survivors and their families in making appropriate quality of life decisions
• Be available to survivors wherever they live, regardless of race, ethnicity, sexual orientation or ability to pay
• Be compassionate to people at all stages of living with a serious illness
• Support the family in managing a loved one's illness throughout its course, including providing assistance with grief and bereavement
• Respect the cycle of life and recognize death as the natural end of this cycle

Palliative care is provided by a team approach that may include the services of a variety of health care and other professionals including, but not limited to the following.

• oncologists
• primary care physicians
• physicians who specialize in palliative care
• nurses
• social workers
• pain specialists
• physical or occupational therapists
• dietitians
• pharmacists
• psychiatrists
• psychologists
• counselors
• spiritual or faith-based advisors
• financial planners (for help with financial matters)
• attorneys (for help with legal matters)

Palliative care may be delivered in and continued across various settings at different times. This is known as continuity of care. These settings can include the following.

• inpatient hospitals
• outpatient clinics
• physician offices
• skilled nursing or assisted living facilities
• survivors' homes

Do all health care professionals describe this care as "palliative care?"

Some health care professionals think that palliative care is only given to those nearing end of life. In the past, palliative care focused on improving the physical comfort of survivors nearing the end of life, while addressing their emotional and spiritual needs and those of their families. This view of palliative care has been associated with hospice and end-of-life care. While palliative care includes hospice and end-of-life care, it also includes care for people at all stages of life-limiting or life-altering illnesses.

The definition of palliative care includes recognizing and treating the physical, emotional, social, spiritual and practical concerns of a survivor at any stage of living with cancer or other life-limiting diseases. This system of care offers assistance with all symptoms related to cancer from the time of diagnosis throughout the survivor's life.

What you call it is not important so long as you are getting the care you need.  You and your health care team may not use the term "palliative care" to describe post-treatment services. Other words you may hear to explain palliative care include whole person care, comfort-oriented care and supportive care.
 
When do survivors need palliative care?

Palliative care may be given during cancer-fighting treatment and at any time thereafter. Your needs are likely to change over time.  No two survivors will have exactly the same experiences and needs. You may complete treatment and then continue your life with only minor changes. Or you may face new physical and emotional challenges as well as uncertainty about many things.

For example, you may seek support for emotional issues immediately following treatment. Or years down the road, you may have concerns about how cancer or cancer treatments have affected your body as you age.

What is important to remember is that palliative care is appropriate whenever you need it - now or in the future. So be active in asking for the help you need and deserve throughout your survivorship.

Below are three general times during survivorship where palliative care plays a large role:

During cancer-fighting treatment, palliative care provides:

• Aggressive treatment of adverse effects related to cancer-fighting treatment
• Relief of pain, nausea and other physical symptoms
• Assistance with practical concerns, as needed, including help with transportation, finding caregivers, insurance matters or legal matters relating to advance directives (written documents that detail your wishes for health care in the event you are unable to express them)
• Planning for rehabilitation services (for example, physical or occupational therapy) that may be needed during or following cancer-fighting treatment
• Emotional support

Throughout post-cancer treatment survivorship, palliative care provides:

• Ongoing support for survivors and their families to enhance quality of life after cancer-fighting treatment
• A range of services that addresses the survivor's individual physical, emotional and practical needs

At the end of life, palliative care provided by hospice may include:

• Care to enhance quality of life as much as possible (physical, emotional and spiritual comfort)
• Pain relief and management of other symptoms to make survivors as comfortable as possible
• Support through hospice for survivors who have six months or less to live and their families
• Services provided by trained hospice professionals and volunteers wherever the survivor is living
• Spiritual or faith-based counseling as requested
• Planning of funeral or memorial services
• Grief and bereavement counseling for family members
• Assistance with advance directives

Survivors who are not receiving palliative care from a hospice organization may be receiving help from primary care physicians and nurses to relieve pain and manage other symptoms.

Who needs palliative care?

Any survivor who is facing physical, emotional, social, spiritual or practical challenges can benefit from palliative care to improve how they feel in all areas of their life.

Adverse effects of cancer-fighting treamtent and aftereffects will vary depending on the type of cancer and type of treatment. The symptoms described below may not apply to all survivors.

Examples of the kinds of concerns survivors may face as a result of the cancer or the aftereffects of cancer-fighting treatments include:

Physical Concerns

For survivors during cancer-fighting treamtent:

• nausea and vomiting
• pain
• fatigue, weakness or loss of energy
• insomnia (unable to sleep)
• changes in sexual function or fertility
• problems with thinking or concentration (cognitive problems)
• infections
• skin changes
• problems with teeth and the mouth
• loss of appetite

For survivors who have completed cancer-fighting treatment and depending on the type of cancer and treatment, the aftereffects may include:

• lymphedema (swelling)
• recurring or ongoing (chronic) pain
• fatigue, weakness or loss of energy
• insomnia (unable to sleep)
• changes in sexual function or fertility
• problems with thinking or concentration (cognitive problems)
• infections
• skin changes
• changes to teeth and mouth
• loss of appetite

Emotional Concerns for Survivors at Any Stage:

• depression or sadness
• anxiety
• fear of the future
• anger
• stress
• grief
• relationships with friends and family
• starting new relationships
• concerns relating to faith and beliefs

Practical Concerns for Survivors at Any Stage:

• work
• financial changes
• insurance matters
• advance directives
• power of attorney (financial)
• wills
• care for children
• transportation

What types of services might be included in palliative care?

Different types of palliative care are available to address your individual needs. Trying to decide by yourself what you need and where to go for help can be overwhelming. That is why you should work closely with your health care team to learn what options may be appropriate for you.

Always talk with your health care team before starting any approach that includes physical treatment (such as exercise, massage or physical therapy) or medication, including herbs or vitamins.  

What follows is just a partial list of the different palliative care options you and your health care team may explore to help you feel your best in all areas of your life:

Options to address physical concerns:

• medications to treat symptoms or side effects
• physical or occupational therapy
• massage
• exercise
• yoga
• nutrition counseling

Options to address emotional concerns:

• counseling (emotional, spiritual or faith-based)
• journaling
• meditation
• support groups
• medication (for symptoms such as depression)

Options to address practical concerns:

• budget preparation
• tax advice
• wills and estate planning
• advance directives and care planning
• job counseling or training
• assistance with insurance matters
• legal advice

Which professionals might be included in palliative care?

Just as there are different types of palliative care, you may consult or work with a number of different professionals to find and receive the help you need. Be honest about your symptoms with your health care team. Be sure to talk with your health care team before beginning any therapy or treatment.   

Palliative Care Professionals

How can survivors talk to their health care teams about palliative care?

If you have not yet started cancer-fighting treatment, talk to your health care team about your treatment options and what adverse effects are possible. Ask if there is anything they can do to help you prepare for these possible adverse effects.

If you are currently receiving cancer-fighting treatment, let your health care team know how you are feeling and what your concerns are. They can help you with your symptoms or refer you to a specialist.

If you have completed cancer-fighting treatment, you may think that you do not need to worry about other problems. You might even think you are imagining certain problems because no one told you what to expect. Like many survivors, you may feel embarrassed, frightened or confused about your symptoms and be shy or afraid to talk about them. Or you may not know how to describe what you are feeling.  All of this is common.

Remembering what you were feeling physically and emotionally between health care team visits can be difficult. You may want to write about your experiences on a piece of paper or in a journal, especially if your physical symptoms and emotions often change. Writing about all of your concerns in advance will help you tell your health care team exactly what you want them to know. 

During all health care visits, ask what changes or symptoms you might expect to experience. Be open about discussing what you are thinking and feeling at the time of the visit. Your concerns may be easy to treat, and seeking help for symptoms as they occur may help prevent future problems or complications.

Good communication with your health care team will help you get the care you need.

• Tell your health care team your concerns so that they can provide you with the best care.
• Ask if other survivors have had similar symptoms and what has helped them.
• Use the LIVESTRONG^TM Health Care Journal (found under "Survivorship Tools") to write down the questions you want to discuss with your health care team.
• See the Suggestions document for more information about how to use your Health Care Journal, along with a list of questions you may want to discuss with your health care team.
• If you think your health care team is not giving you the help you need to treat your symptoms, ask for a referral for consultation with another physician who is certified in hospice and palliative care.
• Remember that getting a second opinion for major health care decisions is expected and common. Ask your physician to help you with this.

These ongoing discussions with your health care team will help you feel more confident about caring for yourself and asking for the help you need throughout survivorship. Survivors, their families and health care providers must all work together and communicate well in order to get survivors the help they need.

How can survivors find palliative care options?

Knowing what you need and where to go for help can be difficult and confusing.  The move from the cancer-fighting treatment phase into post-treatment can bring many changes. However, living a full and productive life is worth the effort of asking for help.

• The best place to start is with members of your health care team. Your health care team includes your primary physician (oncologist or family physician), nurse, social worker or any other medical professional you visit. Talk to the professional that you visit the most or feel most comfortable with.
  • Ask your health care team what they can do to help treat your symptoms or concerns.
  • Ask your health care team about professionals and resources in your community that specialize in treating your symptoms or concerns, particularly specialists who have experience in working with cancer survivors.
  • If your health care team cannot answer your questions, ask them to assist you in finding other professionals who can help you.
  • Ask your health care team if your local hospital or hospice has palliative care programs or services that can help you.

• Find a cancer support group where you can talk with other survivors and learn how they have managed specific symptoms or life problems. They may have suggestions for additional professionals and resources you can use.

• Try different therapies if needed to find what works best for you. You must be active in asking for help until you and your health care team find the best solutions.

• As you explore different options, ask about insurance coverage, costs and payment plans.

• Many palliative care methods can be used together to help you feel well in all areas of your life. Explore many options. (For example, you may find exercise helps you to avoid fatigue, while talking to a counselor helps you to manage stress.)

How can survivors coordinate the different kinds of palliative care?

As a post-treatment survivor, you may be seeing and working with many types of professionals. Along with your health care professionals, you may need the services of non-medical providers such as financial planners or attorneys.

Keeping track of all the professionals you are seeing and the services that you are using can be difficult. You do not have to do it alone.

For your physical and emotional needs:

• Ask your health care team to help you understand how all of your care fits together.
• Be active in talking about your needs and asking for help. Your team needs to know what is happening with you in order to provide you with the best care.
• Keep each of your health care professionals informed about what you are doing, who you are seeing and what therapies are giving you the best results.
• Use the LIVESTRONG Health Journal to keep track of symptoms and questions you want to ask your health care team.
• Use the LIVESTRONG Treatment Summary (found under Survivorship Tools on livestrong.org) to keep track of treatments, as well as the names of the health care professionals you have consulted. This will help you to remember what techniques work best for each physical, emotional or practical concern you have. You will also have this information handy to update your primary care physician and other providers about which treatments you are using or have tried in the past.

For practical concerns:

• Ask the professionals how you can keep track of your records and the services you received.
• For practical matters, such as insurance matters and financial planning, ask the professional you see the most (doctor, nurse or social worker) if s/he can refer you to professionals who are experienced in helping cancer survivors with these concerns.
• If you need assistance with tracking expenses, preparing a budget, financial plan or tax returns associated with your palliative care, ask your family or friends for help.

For all of your concerns:

• Keep a folder that contains all information on all the services you are receiving. You can keep the LIVESTRONG Health Journal (found under Survivorship Tools on livestrong.org) and the Treatment Summary in this folder.
• Ask your family and friends to help you organize and maintain records on the different kinds of palliative care you are receiving.

What are some of the challenges to receiving palliative care?

• Misunderstanding about the meaning of palliative care: The most common misunderstanding about palliative care is that it is given only to  those nearing end of life. This misunderstanding is common among medical professionals as well as the general public.

• Financial limitations: Cancer diagnosis and treatment can create a large financial strain on survivors and their families, even those with health insurance.  Some may choose not to add to their financial burdens, thinking they cannot afford palliative care. However, some services may cost very little or nothing. When you talk to your health care team, explain that you need to find services that fit within your budget. Some palliative care services may be covered under traditional health insurance, but the insurance plan will not use the term 'palliative care' to describe these services. 

• Lack of energy: Nausea and fatigue during treament, fatigue as an aftereffect of treatment and stress can leave survivors feeling too exhausted to ask for help.

• Lack of understanding: Survivors may not know that they can get help for many of the adverse effects of cancer-fighting treatments. Survivors who have just completed treatment may be so overwhelmed with having survived that they do not want to complain about aftereffects. Or, they may believe that nothing can be done for their symptoms.

• Health care team does not suggest palliative care: Not all doctors are familiar with the aftereffects of cancer treatment, so they may not offer a full range of treatment options. Not all doctors will know what services are available. Some health care workers may avoid referrering survivors to palliative care services because they incorrectly think that means giving up on treating or curing the cancer.

• Difficulty finding services: Palliative care programs exist in many hospitals and hospices across the country. However, finding out what services are available in your area may be difficult. Survivors may find it hard to decide what help they need and to find out what services are available in their area.

If you experience any of these challenges, ask your health care team and any other professionals you visit for more information. When a professional does not have answers for you or does not pay attention to your concerns, you can choose to visit someone else. You deserve to get the help that you need.

Achieving and maintaining the highest quality of life.

Look to palliative care as a way for you to feel your very best in every area of your life. Your total well-being matters to you, your family and to your health care team.

This document was produced in collaboration with:
Betty Ferrell, R.N., Ph.D., Cancer Survivorship Consultant
Jennifer Zieger, M.P.H., Pancreatic Cancer Action Network
Michelle Duff, D.P.T., Pancreatic Cancer Action Network

Works Cited
National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care. May 2004.
www.nationalconsensusproject.org
 

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Quality of Life and Palliative Care: 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.

Keep a written record of all of your symptoms and concerns.

During and after treatment, be aware of the changes in your day-to-day physical and emotional health.  Keep your health care team informed about changes that affect your overall well-being and ability to go about your daily routines. 

Telling your health care team about all of the physical and emotional symptoms you are experiencing is very important to getting the right health care.  However, describing your symptoms and concerns can be difficult.  Writing this information down before your health care team visit can help you organize your thoughts and make sure that you talk about important information.

You can use the LIVESTRONG Health Journal to write down all of your physical and emotional symptoms and concerns.   You can download the Health Journal from the Cancer Support section of livestrong.org.   

The Health Journal includes:

• Instructions on how to use the Journal to organize your questions and concerns and prepare for health care team visits
• A Health Diary to record all of the physical and emotional symptoms you notice and when they happen
• A Health Care Team Appointment document to write down your appointment dates and questions you want to ask your health care team
• A List of Medications document to help you keep track of your medications

Questions you can ask your health care team about palliative care.

Physical concerns

Before cancer-fighting treatment

• How can you help me prepare for possible adverse effects of cancer-fighting treatment? 
• What adverse effects are common for the treatment I will receive?

During cancer-fighting treatment

• How can you help manage adverse effects while I receive cancer-fighting treatment? 
• What adverse effects are common for the treamtent I am receiving?
• What medications can help?

After cancer-fighting treatment

• How will I know if my cancer comes back?
• How often should I see a doctor, and should it be an oncologist?
• What aftereffects are common for my type of cancer? What aftereffects are common for my type of cancer treatment?
• What medications are available to help me manage physical aftereffects?
• Are there other methods that might be helpful to relieve my physical aftereffects?
• Can you refer me to an oncology social worker to help me find the palliative care I need?
• Who should I call if my symptoms are not relieved?
• If you are not able to relieve my symptoms, is there a specialist that can help me?  If necessary, will you refer me to a palliative care certififed specialist?

Emotional concerns

• What types of services or professionals are available to help me with the emotional aftereffects of cancer treatment?
• Are there cancer support groups or meetings you could suggest I join?
• Who can help me talk to my family and educate them about palliative care?
• What if I am not satisfied with my palliative care treatment or providers?
• Are there common emotions I can expect to feel, and what can be done to address them?
• What are some ways I can reduce or manage my stress or anxiety?

Practical concerns

• What types of services or professionals can help me manage the financial and legal aftereffects of cancer treatment?
• Is there anyone within your office who can help me sort out insurance and financial matters or help me apply for Medicaid?  If not, where would you suggest I look for help?
• How is palliative care paid for? Will my insurance cover it?

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Quality of Life and Palliative Care: Additional Resources

The resources listed below provide more detailed information and support services to help you with palliative 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
• National Consensus Project for Quality Palliative Care
• LIVESTRONG SurvivorCare Program
• National Cancer Institute (NCI)
• American Cancer Society
• Center to Advance Palliative Care

National Hospice and Palliative Care Organization
www.nhpco.org

The National Hospice and Palliative Care Organization is a nonprofit organization offering information on palliative care, pain management, advance directives, caregiving, financial planning and choosing a care facility. Pain management information includes tips for talking to your doctor and setting pain treatment goals. Financial planning information includes ways to pay for long-term care 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 palliative care providers and programs in your community. Some information is available in Spanish.

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National Consensus Project for Quality Palliative Care
www.nationalconsensusproject.org

The National Consensus Project for Quality Palliative Care (NCP) is a joint effort between three organizations: the Hospice and Palliative Nurses Association, the American Academy of Hospice and Palliative Medicine, and the National Hospice and Palliative Care Organization. These groups are working together to increase awareness of palliative care and to raise public understanding of the need for such care. Through this Web site, survivors can learn more about what palliative care is, as well as how these organizations are working to advance this practice.

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LIVESTRONG SurvivorCare Program
www.livestrong.org/survivorcare

LIVESTRONG SurvivorCare offers assistance to all cancer survivors, including the person diagnosed, caregivers, family and friends. The program provides education, information about treatment options and new treatments in development, counseling services and assistance with financial, employment or insurance issues. To provide these services, LIVESTRONG SurvivorCare has partnered with several organizations, including CancerCare, Patient Advocate Foundation and EmergingMed.

The LIVESTRONG Survivorship Notebook is a tool that can help you organize and guide your cancer experience. The portable, three-ring binder contains a variety of information covering a full range of physical, emotional and practical survivorship topics. You may order a free LIVESTRONG Survivorship Notebook at www.livestrong.org/notebook. Shipping and handling charges will apply.

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National Cancer Institute (NCI)
www.cancer.gov

Cancer.gov, the National Cancer Institute Web site, provides accurate, up-to-date information on many types of cancer and the challenges cancer can bring. You can also use the site to search for information by cancer type or topic, and you can access information about treatment-related issues. Information about financial and insurance matters is also included. You can learn how clinical trials work and search for a clinical trial in your area. This site has a detailed dictionary of cancer terms. Web site information and publications are available in Spanish.

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American Cancer Society
www.cancer.org

The American Cancer Society Web site contains information about many of the challenges of cancer and survivorship. You can search for information by cancer type or by topic. ACS provides a list of support groups in your area, or you can join online groups and message boards. Some information on the Web site is available in Spanish, Chinese, Korean and Vietnamese. Information specialists can answer questions 24 hours a day by phone or email.

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Center to Advance Palliative Care
www.getpalliativecare.org

Getpalliativecare.org is sponsored by the Center to Advance Palliative Care. It provides clear, comprehensive non-hospice palliative care information for people coping with serious illness such as cancer. Key components of the site include a Palliative Care Directory of Hospitals , a definition of palliative care, and a detailed description of what palliative care is and how it differs from hospice care. It also provides an interactive questionnaire to assist people in determining whether palliative care is appropriate for them or their loved-one.

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