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.

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 Additional Resources documents for questions to ask and for more resources.

The term palliative (pronounced PAL-yah-tiv) is used to describe health care that is meant to relieve the symptoms of a disease rather than to cure it. It focuses on comfort and quality of life. Cancer treatments are designed to cure or control cancer. Palliative care can be given at the same time as treatments or at any time after a cancer diagnosis.

Life during and after cancer treatment may require ongoing care and attention to help you feel your best in every area of your life. Palliative care focuses on the total well-being of a patient. It respectfully addresses and treats physical, emotional, social, spiritual, and financial needs from the time of diagnosis through the end of life.

This document describes how palliative care can improve the overall quality of life. The information will help you:

• Understand who can benefit from palliative care
• Find out about guidelines for palliative care
• Identify professionals and organizations who provide palliatiave care
• Learn how to work with your health care team to find the care you need
• Know how to ask for help

Who can benefit from palliative care?

Palliative care may be appropriate and beneficial at any stage of the cancer journey including for those survivors who:

• Are seeking or receiving cancer treatment
• Recently completed treatment (may or may not be cancer-free)
• Finished treatment years ago
• Are experiencing cancer as a chronic (ongoing) illness
• Currently are participating in clinical trials to evaluate treatments or quality of life issues (such as the effects of exercise on reducing fatigue)
• Have had cancers that are likely to recur
• Have advanced cancer and may be approaching the end of life

Some health care professionals may think of palliative care only as the care given to those nearing end of life. This is because, in the past, the term palliative care was focused on hospice care and improving the physical comfort of survivors nearing the end of life. It also included addressing the emotional and spiritual needs of the patient and his or her loved ones. While palliative care still includes hospice and end-of-life care, it now also includes care for people at all stages of life-altering illnesses.

What you call this type of care is not as important as getting the care you need. Your health care team may not use the term palliative care to describe post-treatment services. Other terms may be used to define this type of care such as whole-person care, comfort-oriented care or supportive care.

What guidelines exist for palliative care?

Palliative care focuses on preventing, treating, reducing or removing discomfort whenever and however it appears. The quality of life is given more importance than focusing only on the length of life.The personal satisfaction of the patient with how he or she feels and lives defines quality of life. Getting the help you need for any concern you have will help you create a high quality of life.

The National Consensus Project (NCP) for Quality Palliative Care has created a set of accepted professional guidelines that define palliative care and provide guidance to health care professionals. You can download a copy of the most current set of guidelines by visiting http://www.nationalconsensusproject.org.

The NCP guidelines are meant to help relieve suffering and provide support for survivors to enjoy the best possible quality of life at all stages of living with cancer. They focus on preventing, evaluating and treating pain and other physical, emotional and spiritual concerns.

These guidelines address specific areas of care including physical, psychosocial, cultural, spiritual, ethical and legal. The goal is to provide patient and family-centered care by putting survivors and their loved ones first while addressing and respecting individual needs and wishes.

Who provides palliative care services?

Palliative care generally involves a team approach that can include the services of a variety of health care and other professionals for physical, emotional, spiritual and practical concerns. These services 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
• Health care provided at home

The followng tables cite the types of professionals who provide services and an overview of their roles.

Physical Well-Being

Always check with your health care team before starting any approach that includes a change in physical treatment such as exercise, massage or physical therapy, medication, herbs and vitamins.

Emotional, Social, Spiritual Well-Being

Assistance with Practical Concerns

When might palliative care be needed?

Palliative care may be given during treatment and at any time after. The needs of survivors change over time, and no two will have exactly the same experience. Some may complete treatment and continue life with few or minor changes. Other survivors might face physical or emotional challenges that begin immediately or many years after treatment.

Palliative care is appropriate whenever you need it–now or in the future. You have the right to ask for the help you need throughout your survivorship at any time during your cancer journey.

At the time cancer is diagnosed and during treatment, palliative care may include:

• Aggressive treatment of adverse effects related to cancer treatment
• Relief of pain, nausea and other physical symptoms
• Help with practical concerns including help with transportation, finding caregivers or insurance matters
• Assistance with 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 such as physical or occupational therapy
• Emotional support

After cancer treatment, palliative care can provide:

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

End-of-life palliative care provided by hospice may include:

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

Various types of palliative care are available to address individual needs. Work closely with your health care team to learn what options may be appropriate for you.

The following is a partial list of palliative care options you and your health care team may decide to explore in various areas of your life:

How can you talk with your health care team about palliative care?

Start by finding out if your health care team can provide palliative care service. If you have not yet started cancer treatment, ask about treatment options and what side effects and late effects are possible. Ask if there is anything they can do to help you prevent or prepare for possible adverse effects.

Anytime, during or after treatment, it is important to let your health care team know how about your feelings and concerns. They can help you with your symptoms or refer you to a professional specialist for help that is right for you.

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. Second Edition, March 2009.
www.nationalconsensusproject.org

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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.

Ask your health care team about palliative care for different areas of your life such as:

Physical concerns

Before cancer treatment

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

During cancer treatment

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

After cancer 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 and 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 help is needed, where can I find assistance?
• How is this type of palliative care typically paid for?
• Will my insurance cover it?

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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.

Online: Complete an intake form through the LIVESTRONG website.
Phone: 1.855.220.7777 (English and Spanish)
Navigators are available for calls Monday through Friday, 9 a.m. to 5 p.m. (Central Time). Voicemail is available after hours.

LIVESTRONG offers assistance to anyone affected by cancer, including the person diagnosed, loved ones, caregivers and friends. The program provides information about fertility risks and preservation options, treatment choices, health literacy and matching to clinical trials. Emotional support services, peer-to-peer matching and assistance with financial, employment and insurance issues are also available. To provide these services, LIVESTRONG has partnered with several organizations including Imerman Angels, Navigate Cancer Foundation, Patient Advocate Foundation and EmergingMed.

American Cancer Society
www.cancer.org

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

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

The National Consensus Project (NCP) is a joint effort among four organizations: the American Academy of Hospice and Palliative Medicine, the Center to Advance Palliative Care, the Hospice and Palliative Nurses Association, and the National Hospice and Palliative Care Organization. These groups worked together to develop the Clinical Practice Guidelines for Quality Palliative Care available for free download). They are now working to increase awareness of palliative care and to raise public understanding of the need for such care. Through the NCP Website, survivors can learn more about what palliative care is, as well as how these organizations are working to advance the quality of palliative care.

National Hospice and Palliative Care Organization
www.nhpco.org

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

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

The National Cancer Institute’s website provides accurate information about the challenges cancer can bring. You can search for information by cancer type or topic. You can find information about treatment, financial and insurance matters. You can also learn how treatments in development work and search for a clinical trial in your area. This site also has a good dictionary of cancer terms, drug information and other publications. Cancer information specialists can answer your questions about cancer and help you with quitting smoking. They can also help you with using this Web site and can tell you about NCI's printed and electronic materials. The knowledgeable and caring specialists have access to comprehensive, accurate information on a range of cancer topics, including the most recent advances in cancer treatment. The service is confidential, and information specialists spend as much time as needed for thorough and personalized responses.

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