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Why Everyone Deserves Palliative Care

November 29, 2011

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.

 

Filed Under:

Survivorship

Comments

11/30/2011 8:03:52 AM #

Joseph E. Bauer

Terri,

    Excellent article that succinctly differentiates between the concepts of Hospice and Palliative Care,

                                                   Joe Bauer

Joseph E. Bauer

12/2/2011 11:36:36 AM #

Rebecca Kirch

Terri,
What a wonderful and timely blog on the benefits of palliative care.  While it remains a mystery to many Americans, our national poll this past summer revealed that once consumers understand what palliative care is -- an increased team-based emphasis on symptom management, comfort and patient choice -- they want it, overwhelmingly (92 percent).  As you so aptly note, we all have a role to play in informing patients and their families, health professionals, and policymakers about palliative care so we can save lives AND stop suffering. That's what is needed to truly deliver on the promise of providing high quality, patient-centered and family-focused care. -- Rebecca Kirch

Rebecca Kirch

2/7/2012 5:46:00 PM #

Sandra Wade

It is about time for more and more attention regarding the cancer patients (like myself) who have incurred multiple life-threatening, chronic illneness(s) as a result of cancer treatments received.  My experience seems to be the status-quo in the cancer treatment facilities at large which is getting the best and brightest in oncologists and medical technology that brings a lot of collateral damage with no attention at all or very little attention given to treating the symptoms of all the damage the cancer patient is left to live with.  

I am currently attempting to find all the information I can on how many cancer treatment centers we have in the nation whether it is a federally/state funded hospital or stand alone treatment center, private or not-for-profit and compile a comparison of services.  I've learned that not all cancer treatment centers are equal and there are huge differences in program services for patients, especially for survivorship needs.  I have had an extremely difficult time finding the help I need and then when I did find something CAM/palliative care, I could not afford to pay for services.  The private non-profit had a sliding scale fee policy but when cancer has bankrupted me even $30 per session for massage, acupuncture etc is out of my ability to pay.  It is frustrating and discouraging to see the many advertisements on national and local TV about how much treatments have advanced and how much money is raised for cancer research and for patient care but I have found it not only difficult but almost impossible to find that help.  I have been deathly sick for over 8 1/2 years and I have been too sick to try and fight for help or find someone that would fight for me.

I have made a commitment to become educated and empowered to be a cancer survivor advocate and to help educate and build a support system for cancer patients who are still too sick to advocate for his or her own needs.  I have begun this endeavor by researching all cancer treatment centers, where they are located and what they offer.  Then I hope to find ways to spread that information and find ways to help people with information and locating practical and financial help.  If this information already exists, I'd love to get it.

Sandra Wade, North Palm Beach, Florida  

Sandra Wade

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