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Feature:
Palliative Care

Palliative Care: Increasing the quality of life for patients and families…

Palliative Care: Conversations Matter™ for Sick Children

"Palliative Care: Conversations Matter™" is a new National Institute of Nursing Research (NINR) campaign that aims to increase the use of palliative care for children living with a serious illness

Research shows that palliative care can reduce a child's pain, help manage other distressing symptoms, and provide emotional support. Yet, many healthcare providers hesitate to recommend palliative care for their youngest patients, and parents and caregivers are often unaware of its benefits.

"Initiating palliative care conversations is often hard for both providers and families," notes Dr. Patricia A. Grady, NINR director. "While it may not be easy, recommending palliative care to patients and families early can improve patient outcomes."

"Palliative Care: Conversations Matter™" offers helpful videos and a tear-off pad, which includes tips for healthcare providers, answers to common questions about palliative care, and customizable patient education sheets designed to guide the healthcare provider's discussion with the patient and his/her parent or caregiver. These sheets can be tailored to individual patient needs. For more information and to download materials, please go to: www.ninr.nih.gov/conversationsmatter.

Palliative Care Is Different from Hospice Care

Palliative care is available to you at any time during illness. You can receive palliative care while you receive treatment for your illness, whether or not you can be cured. The goal is to make you as comfortable as possible and improve your quality of life.

You don't have to be in hospice or at the end of life to receive palliative care. People in hospice always receive palliative care, but hospice focuses on a person's final months of life. To qualify for some hospice programs, patients must no longer be receiving treatments to cure their illness.

Dr. Patricia A. Grady, Director of the National Institute of Nursing Research (NINR).

Dr. Patricia A. Grady, Director of the National Institute of Nursing Research (NINR).
Photo courtesy of National Institute of Nursing Research (NINR)

Dr. Patricia A. Grady is Director of the National Institute of Nursing Research (NINR). An internationally recognized researcher, Dr. Grady's scientific focus has primarily been in stroke, with emphasis on arterial stenosis and cerebral ischemia. She was elected to the Institute of Medicine in 1999 and is a member of several scientific organizations, including the Society for Neuroscience, the American Academy of Nursing, and the American Neurological Association. She is also a fellow of the American Stroke Association.

The NINR promotes and improves the health of individuals and families through research in chronic and acute diseases, health promotion and maintenance, symptom management, health disparities, caregiving, self-management, and the end of life. It also supports the training of new researchers.

What is palliative care?

Palliative care refers to the supportive care of patients with serious illnesses, as well as the supportive care that is available for family members. The goal is to increase the quality of life for the patient. It does not necessarily mean end of life or hospice care, although palliative care may be offered as part of these, too.

Conversation Matters™ Logo

The "Conversations Matter" logo is part of a palliative care educational campaign.

How does it work?

It is a comprehensive team approach that entails pain and symptom management, emotional support and counseling, and advanced care planning. A broad team of health professionals, from doctors and nurses to counselors, chaplains and social workers, provides the support.

Does palliative care replace normal treatment for a cure?

No. It augments the patient's clinical treatment.

Can I be treated at home?

Palliative care can be available in a variety of settings, even in the home. A number of team members may be involved.

Is palliative care only for old people?

Palliative care is important for all people who are dealing with serious and life-threatening illnesses. Much of the focus has been on the older population, but palliative care is very important for children and their families, too. Part of our goal is to raise awareness about that.

How are you spreading the word about palliative care for the young?

We have begun a national public awareness campaign called "Palliative Care: Conversations Matter™" (see accompanying article). The aim is to spark increased and continued awareness about the availability of palliative care throughout the course of serious illness among health professionals, pediatric patients, and their families.

Doctor Examining Baby
Read More "Palliative Care" Articles

Increasing the quality of life for patients and families… / Video Tells a Mother's Story of Caring Support / Palliative Care Eases Symptoms, Enhances Lives

Spring 2014 Issue: Volume 9 Number 1 Page 4-5