We often think of November as a time for gathering with friends and family as we acknowledge our gratitude for all that we have in our lives. I think it is very fitting that this month associated so closely with family is designated National Family Caregivers Month and National Hospice and Palliative Care Month. Both of these observances touch upon issues that are vitally important to patients and patients’ families and to nursing science.
NINR has a unique place within NIH as the leading Institute on end-of-life care. Our Institute supports science to assist individuals, families, and health care providers in managing the symptoms of serious illnesses and planning for end-of-life decisions. However, we also recognize that palliative care is a critical component of maintaining quality of life at any stage of illness, not just at the end of life.
Some of NINR’s work in this area was featured in NIH’s MedlinePlus magazine earlier this year in an issue focused on caregiving. The issue highlighted several resources from NINR that can be useful to those caring for a family member or loved one. Read the issue and learn more about NIH’s work on caregiving here.
A resource that is often requested by patients and providers is our palliative care brochure, which we recently updated. The purpose of this brochure is to provide patients with serious illnesses and their families with clear information about what palliative care is, who it benefits, and how it works. The revised publication, Palliative Care: The Relief You Need When You Have a Serious Illness, is available in English and Spanish.
Since NINR supports science that enhances health and wellness across the lifespan, we developed the Palliative Care: Conversations Matter® campaign which focuses specifically on pediatric palliative care --such an important, but often not talked about subject. As one parent told us, “I had no idea that the main goal of palliative care is assuring quality of life with a focus on living.” For families who have a child with a serious illness, pediatric palliative care can be life-changing.
To increase awareness of pediatric palliative care among parents and health care providers, NINR created evidence-based materials such as videos, tear-off pads, resource cards, fact sheets, and brochures. We also recently released an online toolkit to encourage health care providers to give presentations to their colleagues about pediatric palliative care and the Palliative Care: Conversations Matter® campaign. The toolkit includes a workshop presentation, promotional materials, and educational resources.
I invite you to share with your colleagues, your patients, and your friends and families, some of the palliative care resources we have. With the work we’re doing at NINR and the research we support at institutions across the country, we hope to improve the quality of life for those with serious illnesses, as well as their families and caregivers.
Ann K. Cashion, PhD, RN, FAAN
National Institute of Nursing Research
National Institutes of Health