November marks National Hospice and Palliative Care Month. As we observe this awareness month, I wanted to share some of NINR’s work in these areas. Both hospice and palliative care focus on symptom management and quality of life. The difference between the two is that palliative care is available at any stage of illness, regardless of prognosis. Hospice is offered exclusively at the end of life.
NINR refers to our research on end-of-life and palliative care (EOLPC) as “The Science of Compassion.” As the lead Institute on end-of-life research at NIH, we have numerous resources to promote awareness of hospice and palliative care and explain the benefits these types of care can offer. We believe so strongly in the importance of this research topic, that it is one of four areas of emphasis in the NINR Strategic Plan.
I recently discussed the role of nursing science in informing practice, promoting health, and improving the lives of individuals with advanced cardiorespiratory disease in a Heart & Lung The Journal of Acute and Critical Care paper. The paper describes some of the advances made through NINR-supported palliative care research in areas such as advanced cardiorespiratory symptoms, communication in critical care and other settings, and improving quality of life.
In 2014, we created the Office of End-of-Life and Palliative Care Research (OEPCR) to coordinate and support our funding activities in EOLPC research. Building Momentum: The Science of End-of-Life and Palliative Care. A Review of Research Trends and Funding, 1997-2010 is a seminal report from this office that looks at the trends in EOLPC research publications over a 14-year span. You can read more about NINR-supported EOLPC efforts on the Spotlight on End-of-Life and Palliative Care Research webpage.
As a way to further the dialogue on end-of-life research, we hosted a briefing on the National Academies of Sciences, Engineering, and Medicine (formerly the Institute of Medicine) report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. The briefing reviewed the report's recommendations and featured a discussion of the report's impact on EOLPC research. To watch the video of the briefing event, visit https://www.youtube.com/watch?v=lPD4iJl1Gpg.
We have also created evidence-based educational materials related to palliative care for patients, providers and the public. Our palliative care brochure, "Palliative Care: The Relief You Need When You’re Experiencing the Symptoms of Serious Illness," (available in English and Spanish) explains in easy-to-understand language what palliative care is, who it benefits, and how it works.
While there are many efforts currently aimed at improving palliative care in general and in aging populations, there are far fewer programs and initiatives that focus specifically on the pediatric population. To increase awareness of and improve communications about pediatric palliative care, we developed Palliative Care: Conversations Matter®, an evidence-based communications campaign.
The campaign offers materials for health care providers and for patients, their families, and caregivers. NINR designed the materials based on feedback we collected from providers and from families of seriously ill children. The health care provider materials include a customizable tear-off provider pad (in English and Spanish) and series of video vignettes. The materials for patients, their families, and caregivers are available in both English and Spanish and include a pediatric palliative care brochure, a resource on finding support, a series of family stories, and an at-a-glance fact sheet. This year, we also launched a Spanish-language campaign webpage, a video which uses an animated approach, and a series of provider profiles as part of the campaign.
To address those on the other end of the lifespan, the End of Life module was created for the NIH Senior Health.gov website (http://www.nihseniorhealth.gov). The module is a web feature that describes the physical, mental, and emotional needs of people nearing the end of life and suggests ways to maintain their quality of life, such as hospice and home care. It also addresses complex practical concerns including financial issues, advance directives, caregiver support, and more. In addition, several videos on end of life subjects were co-produced with the National Institute on Aging and are available on our YouTube channel.
I applaud those working on issues related to the Science of Compassion. Nursing science has an opportunity to make an impact on individuals’ lives at many different time points. Addressing the needs of those with serious illness or at the end of their life is such an important part of what we do. Offering interventions and translating our science related to hospice and palliative care can enhance the quality of life for those most in need of symptom management and emotional support.