By Terri Ades, DNP, FNP-BC, AOCN
As an advanced practice oncology nurse, I've been asked many interesting questions about cancer at cocktail parties. While I've never been asked about palliative care, my sense is that more people should be asking about it. Opinion surveys indicate that the public does not understand palliative care. So what? Well, if the public doesn't understand it, then when they or a family member need it, they may be missing out on care they should be receiving.
Palliative care is care given by specialized health professionals to improve the quality of life of individuals and families who face a serious illness. Palliative care addresses the physical, emotional, spiritual, and social needs of a person from the time of a diagnosis to the end of life. It is the care that occurs to relieve symptoms (like pain, nausea, and fatigue) when someone is undergoing therapy to cure their cancer, or to address their emotional suffering when they are told their cancer has progressed, or the social suffering they experience with limited income and health insurance, or their spiritual suffering when they have lost hope.
Not the Same as Hospice
Is it the same as hospice care? Similar, but it is not the same. Palliative care is given throughout a person's illness, while hospice care is given near the end of life. Both focus on improving the quality of life of the person while they are living.
The hospice model of care came to the U.S. in the mid-1970s. Patients who were allowed into a hospice program had to be certified by a physician as having a life expectancy of 6 months or less and could not be receiving life-prolonging treatment. However, since the majority of deaths in the U.S. today (and at that time) occur after a long, progressive, possibly debilitating chronic illness (such as cancer, heart disease, chronic obstructive lung disease, or AIDS) this 6 month life expectancy presents problems. Many individuals' life expectancy is unclear or greater than 6 months.
The palliative care model evolved from the hospice model; and like hospice it addresses quality of life concerns for those individuals with a progressive, debilitating illness. However, while hospice recognizes the quality of life concerns of those patients in their last months of life, palliative care recognizes that individuals can live a long life with a chronic illness and have quality of life concerns throughout that illness experience.
Compassionate Care
Today, we often describe hospice care as a program through which palliative care is delivered as the individual moves closer to end of life. But remember I said that palliative care is given -- or should be given -- any time during the individual's chronic illness. Granted, more palliative care is generally needed nearer the end of life when the chronic disease is progressing and symptoms increase. However, palliative care should be available anytime a person has symptoms from their disease.
It is a relatively new concept and with continued efforts to educate the public, hopefully, when individuals need palliative care, they will know to ask for it.
Sounds like compassionate care, doesn't it? Well, it is. And everyone with a chronic progressive illness such as cancer should have access to it. Palliative care can relieve suffering and improve quality of life by:
- having your pain and symptoms controlled
- having your psychosocial and spiritual needs addressed along with those of your family
- having people recognize and incorporate your cultural values and attitudes into your care
- having support when you and your family experience loss, grief, and bereavement
- knowing that someone can help you with ethical and legal decision-making
- having someone advocate for your wishes and preferences
- knowing that there will be open and honest communication and that the people caring for you have your best interest in mind.
So, the next time you hear of someone with cancer who is suffering, mention palliative care to them and suggest they talk with their physician, nurse, or health care team about it. They have a right to compassionate care that will improve their quality of life.
For more information about what you should talk to your health care professional about regarding palliative care, click here.
Dr. Ades is director of cancer information for the American Cancer Society.
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