For this week’s reading, you were asked to review the National Institute of Nursing Research Strategic Plan for 2016

For this week’s reading, you were asked to review the National Institute of Nursing Research Strategic Plan for 2016. In this discussion, please provide a page in your initial post:

1. Provide a synopsis of a research study (END-OF-LIFE AND PALLIATIVE CARE: THE SCIENCE OF COMPASSION) you read about in the strategic plan.

2. Explain if you were surprised by anything that was presented (i.e. nursing involvement, study design, results).

3. Discuss how might the results of the study impact your future practice as a nurse.

END-OF-LIFE AND PALLIATIVE CARE: THE SCIENCE OF COMPASSION

As the lead NIH Institute for end-of-life research, NINR supports science to assist individuals, families, and health care professionals in managing the symptoms of advanced, serious illness and planning for end-of-life decisions. NINR also recognizes that high-quality, evidence-based palliative care is a critical component of maintaining quality of life at any stage of illness, not limited to the end of life. Activities in this area address issues such as: relieving symptoms and suffering; enhancing communication between patients, families, and clinicians; and understanding decision-making surrounding care of advanced illness at the end of life.

NINR established its Office of End-of-Life and Palliative Care Research (OEPCR) to coordinate and support ongoing and future efforts in improving advanced care for serious illness. OEPCR is leading efforts to stimulate end-of-life and palliative care initiatives, facilitate interprofessional science and collaboration, and identify opportunities for science to inform health care practice. Research supported under NINR’s end-of-life and palliative care program seeks to inform high-quality care for individuals and their caregivers, improve management of pain and other symptoms, and facilitate decision making at all stages of illness, including at the end of life.

End-of-life and palliative care science encompasses research to increase understanding of the unique challenges, barriers, and personal experiences faced by individuals of all ages with advanced illness, from infants and children to the elderly. It also focuses on the experiences of their families and other informal caregivers in navigating the often-difficult circumstances of their loved one’s advanced illness. Research priorities in end-of-life and palliative care science focus on high-quality research that advances new knowledge to assist individuals, their families, and their health care providers. This research explores strategies to manage the complex experiences of advanced symptoms and mitigate the effects of advanced illness on the health and well-being of the individual as well as informal caregivers. In order to optimize decision making, other areas of interest include studies of interventions to promote engagement in ongoing, personalized conversations about end-of-life care preferences and values.

PROFILES OF END-OF-LIFE AND PALLIATIVE CARE

End-of-life and palliative care science develops strategies to prevent and manage the symptoms of advanced illness. It includes management of pain and other symptoms and emotional, social, spiritual, and informed decision-making support. Interventions address supportive, palliative, and hospice needs across a continuum of services in coordination with individuals, families, and their health care teams. Examples of NINR end-of-life and palliative care research activities include:

• Palliative Care Research Cooperative (PCRC) – NINR supported the extension and expansion of a palliative care research cooperative, bringing together multidisciplinary investigators from over 60 institutions across the nation to focus on building the science of end-of-life and palliative care. The cooperative’s mission is to develop scientifically based methods that lead to meaningful evidence for improving quality of life of individuals with advanced and/or potentially life-limiting illnesses and their caregivers, including family members and other care providers. Through these combined efforts, NINR will continue to build the science of end-of-life and palliative care to address the challenges and complex issues faced by individuals and families across the Nation.

• Discontinuing statin therapy for patients with life-limiting illnesses is found to be safe and beneficial – In a multicenter trial, researchers in the NINR-supported PCRC examined the safety of discontinuing statin therapy in patients with advanced, life limiting illness. They found no significant differences in mortality between patients who had discontinued statin therapy and those who had not. These patients who discontinued statins also reported improved quality of life, and health care costs were reduced. These findings provide important evidence needed to inform decision making about statin therapy at the end of life, and highlight the need for providers to have meaningful discussions with patients about treatment options and maximizing their quality of life, key concepts in palliative care.11

• Changing patient outcomes and the practice of hospice care – An NINR-supported study used an analysis of a national database to evaluate U.S. hospice demographics. These data led to the first cross-sectional study of hospice utilization using a CMS database. Findings from this study underscored the complexity of the hospice patient population and the resource requirements of hospices serving patients with higher comorbidity burden. Researchers demonstrated that while hospices reported implementing individuals’ preferences for palliative and hospice care, comprehensive implementation of preferred practices was rare and difficult for small, free-standing hospices to achieve. Publication of these data12 generated wide-spread commentaries in sources such as the New York Times and JAMA Internal Medicine. Public attention was drawn to data showing that one-fifth of Medicare certified hospices active in 1999 had closed or withdrawn from the program by 2009, and four out of five Medicare-certified hospices that entered the marketplace between 2000 and 2009 were for-profit.

In addition to supporting end-of-life and palliative care research, NINR recognizes the importance of communicating science by taking information learned from research and disseminating it to patients, families, and health care providers via the Institute’s website and publications. To that end, NINR has engaged in outreach initiatives, based on the latest science, to provide information and support to the scientific community, clinicians, and the public regarding palliative and end-of-life care.

• Summit on the Science of End-of-Life and Palliative Care: In 2011, NINR convened a national summit on “The Science of Compassion: Future Directions in End-of-Life and Palliative Care.” This three-day, trans NIH scientific summit focused on examining the current state of end-of-life and palliative care science, and envisioning and discussing future directions in research to improve quality of life for those with advanced illness. The nearly 1,000 attendees included scientists, palliative and end-of-life care health professionals, educators, policy analysts, members of professional organizations, and members of the public. The event consisted of: a town hall discussion on the ethics of science at the end of life; three plenary sessions examining various aspects of palliative and end-of-life care science; a special session focused on parents and clinicians as partners in research; ten breakout scientific sessions; and a poster session. Topics for discussion included: complex and co-morbidities; communication and advance care planning; pediatric and perinatal issues; research methodologies; the use of new technologies; and pain and symptom management, among many others. The summit featured research from junior and senior scholars in the field and provided mentoring opportunities, reflecting NINR’s continued commitment to developing future nurse scientists. Events like this summit serve to invigorate and guide the research community’s efforts towards real progress in improving quality of life for those with advanced illness.13

• Palliative Care: Conversations Matter® Campaign: NINR designed an evidence based campaign to raise awareness of pediatric palliative care and to facilitate conversations about palliative care among health care providers, children living with a serious illness, and their families. To develop the campaign, NINR invited parents and palliative care clinicians, scientists, and professionals to give their input and expertise on what they felt was needed in the feld. The frst phase of the campaign focused on health care providers and offered evidencebased materials, such as video vignettes and customizable patient education sheets, to help providers discuss palliative care with pediatric patients and their families. The campaign’s second phase focused on providing resources, such as brochures, for patients and families to increase awareness and empower families to begin a dialogue with health care providers. The Institute hopes that Palliative Care: Conversations Matter® will increase the use of palliative care for children and teens living with serious illnesses.

• End-of-Life Module for NIHSeniorHealth.gov: NIHSeniorHealth.gov, a joint effort of the National Institute on Aging and the National Library of Medicine, provides research-based, online health information for older adults that is presented in clear, large print, easy-toread segments, as well as in open-captioned videos that offer simple navigation. NINR’s End-of-Life module on NIHSeniorHealth.gov contains specifc information for older Americans and their caregivers facing a myriad of questions regarding death and dying, as well as information on palliative and end-oflife care. The module addresses topics such as pain and other symptoms, places and planning for end-of-life care, support for caregivers, and coping with grief.

Future Directions: The Science of Compassion

NINR is committed to supporting innovative end-of-life and palliative care investigations to explore novel approaches for evidence-based interventions, as well as studies to ascertain the physical and psychosocial correlates of serious advanced illness. Other priorities include studies focusing on developing new strategies for aligning care with diverse individual and family-centered goals and preferences throughout the trajectory of advanced illness and into the bereavement period. By addressing the sensitive topic of end-of-life, NINR seeks to provide an evidence base for practical and useful information about the most common issues faced by individuals with a life-limiting condition or serious illness and their caregivers. NINR will continue to support research focused on topics unique to the end of life and palliative care, including:

• Developing strategies to optimize integrated and coordinated care transitions, differential interventions, and treatments to improve patient-centered outcomes of hospice and palliative care across diverse care settings, populations, and cultural contexts.

• Determining the theoretical and causal mechanisms that underlie multidimensional and complex issues and choices in end-of-life and palliative care.

• Developing the most effective ways to screen, assess, monitor, and treat the met and unmet end-of-life and palliative care needs of individuals with serious advanced illness and their families.

• Developing, testing, and implementing personalized, culturally congruent, and evidence based palliative and hospice interventions or treatments that best address the needs of underserved, disadvantaged, and diverse populations across the care continuum.

• Discovering the unique palliative characteristics of multidimensional advanced symptoms with the goal of developing personalized targeted interventions to alleviate or manage symptoms.