1. Dahlin, Connie APRN, BC, PCM

Article Content

From December 6 to 8, 2004, a conference was held with an unbiased expert panel convened by the National Institute for Nursing Research (NINR) and the National Institutes of Health (NIH). This was one of a variety of State-of-the-Science conferences. At State-of-the-Science conferences, recommendations of the panelists provide the supportive documentation necessary for seeking funds to continue research for field advancement. This conference specifically addressed five questions:


* What defines the transition to end of life?


* What outcomes variables are important indicators of the quality of the end-of-life experience for the dying person and for the surviving loved ones?


* What patient, family, and healthcare system factors are associated with improved or worsened outcomes?


* What processes and interventions are associated with improved or worsened outcomes?


* What are the future research directions for improving care?



Testimony was provided by experts in the field as well as the reference of several documents including the Institute of Medicine Report of 1997 and the National Consensus Project "Clinical Practice Guidelines for Quality Palliative Care," for which HPNA has been one of the lead organizations.


Amazingly, more than 900 people attended the conference, including a multitude of various leaders in hospice and palliative care within the United States and abroad. Connie Dahlin and Judy Lentz represented HPNA. We were pleased that NINR, representing nursing, led the conference. We heard the testimony of many leading palliative and hospice care experts including HPNA member Betty Ferrell PhD, RN, FAAN. In addition, there was time for public discussion on a number of issues that was quite lively. Important nursing issues were collaboration and diversity.


At the conclusion of the conference, the NIH expert panel released a report of its findings. They state that many Americans encounter a lack of continuity of care and poor communication between healthcare practitioners, patients, and family members who are coping with death and dying. They recognize that given the graying of America, there needs to be much more research. They conclude that ambiguity about defining end-of-life care hinders care. Most important was the recognition that the current Medicare benefit is inadequate.


Recommendations from the report include health caregiver education to advance the field, and funding further research relating to end-of-life care in areas such as symptom management. The hope is for outcomes that recruit underrepresented populations, address sudden death effectively, and promote financially sound delivery care models. This report should be instrumental in opening doors for funding demonstration projects and other research to promote advancement of the field. The panel's draft statement, titled "Improving End-of-Life Care," is available at


HPNA will utilize this information in creating a new strategic plan in Fall 2005. The Alliance for Excellence in Hospice and Palliative Nursing will continue to monitor further discussion of the conference outcomes in order to promote excellence in nursing practice and research priorities within hospice and palliative nursing and the association itself.


Visit for more information.