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CHEST Foundation award project empowers patients and families through online palliative care resource


 

Designed to educate people about what palliative care is and what it offers, the website Palliative Care Services of Nebraska, www.palliativecarenebraska.com, states: "Palliative care is specialized medical care for people with serious life-limiting illnesses. Its focus lies in providing patients with relief from the symptoms, pain, and stress of illness, whatever the diagnosis. The goal is to improve quality of life for both the patient and the family."

That definition is one piece of a wealth of information available on the website, which was founded by Dr. Lisa Mansur, FCCP, recipient of The CHEST Foundation’s Roger C. Bone Advances in End-of-Life Care Award. In this instance, the term "end-of-life" care is slightly misleading because, as the website points out, "Palliative care is appropriate at any age and any stage in a serious illness and can be provided along with curative treatments." In this way it is different from its close cousin, hospice care, which is solely dedicated to comfort care when curative treatments are no longer appropriate or desired.

"The goal of the Palliative Care Services of Nebraska website is to empower people to learn and understand both the scientific and humanistic aspects of palliative care and to help them make informed decisions," she says. To that end, the site provides links to a wide array of articles, podcasts, and videos; a glossary of terms; and other resources for patients, families, caregivers, and medical professionals.

"Communication is a key tenet of palliative care," says Dr. Mansur. "Better communication equals better medicine." The emphasis on communication between patients, families, and doctors helps ensure that all needs – medical, emotional, spiritual, and practical – are fully met. In fact, Dr. Mansur calls what she and her colleagues practice "narrative medicine," with an emphasis on talking and listening rather than diagnosing and prescribing. That is not to say that patients do not receive treatment for their illness. If so desired, palliative care can work in concert with treatments meant to cure. But the focus is on the alleviation of symptoms, such as pain, fatigue, shortness of breath, loss of appetite, and anxiety or depression. Treatment might include medications along with things like massage and relaxation training. Palliative care focuses on the entire person, not just the illness. And it puts more choices in the patient’s hands.

A critical care specialist, Dr. Mansur recognized the need for palliative care in the critical care unit early in her career. She developed Palliative Care Services of Nebraska in 2010 in concert with Bryan Medical Center, where she is Director of Palliative Care, first as a hospital service with only one or two consultations a week. Since then the program has grown to accommodate up to 65 patients a week and includes an outpatient clinic, a staff of four advanced-practice nurses, and in-home visits for people who are too ill to come to the clinic. With her award from The CHEST Foundation, Dr. Mansur was able to greatly expand the website, which was launched in 2012.

The Roger C. Bone award supports leadership in end-of-life care that stresses the importance of communication, compassion, and effective listening. The award honors the late Roger C. Bone, MD, Master FCCP, who wrote about ethical and humanistic issues surrounding end-of-life decisions and stressed the importance of communication between physicians and patients. For more information about The CHEST Foundation grants and awards program, contact Lee Ann Fulton at lfulton@chestnet.org.

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