Where can I find out more about quality of life and palliative care?
For more information about quality of life and palliative care, including suggestions for taking action and a list of resources, visit the Lance Armstrong Foundation.
Why is knowing about the quality of life and palliative care important to a person affected by cancer?
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.)
What do I need to know about quality of life and 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
What steps should I take to address quality of life and 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.
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