The National Institute of Nursing Research recently convened a 3-day, trans-NIH summit, “The Science of Compassion: Future Directions in End-of-Life and Palliative Care” (EOL PC). With speakers from multiple disciplines and almost 1,000 registrants, it provided an opportunity for scientists, health care professionals and public advocates to meet and network.
|NINR director Dr. Patricia Grady (fourth from l) with panelists (from l) Dr. Joseph Fins, Dr. Nancy Berlinger, Dr. Karla Holloway, Susan Dentzer and Dr. Marie Hilliard
“As we seek to understand what it means to live well while dying, we know our job is not yet done,” said NINR director Dr. Patricia Grady. “There is much to learn, much to understand and much to consider as we translate what we know into meaningful practice.”
Dr. Marie T. Hilliard, a nurse and director of bioethics and public policy for the National Catholic Bioethics Center, served as mistress of ceremonies, while Susan Dentzer, editor-in-chief of Health Affairs and health analyst with the PBS NewsHour, served as moderator. A panel of three leading bioethicists shared their views on EOL PC research.
Opening keynote speaker for “The Science of Compassion,” Dr. Ira Byock
Photos: Michael Spencer
|Parent advocate Dianne Gray talks about her experiences with clinicians in the death of her son from a rare neurologic disorder.
During the question period, audience members commented on uneven access to palliative care services; the importance of symptom management; training health care workers to improve communication; including caregivers in planning and decision-making; and differences in EOL PC decision-making according to culture, ethnicity, gender and age.
Said Hilliard, “The diagnosis of a life-limiting illness often intrinsically changes a patient’s and their loved ones’ life view…no clinical trial, regardless of potential scientific benefit or level of risk, can compromise the humane care that should always be the foundation of research.”
Dr. Ira Byock, director of the palliative care service at Dartmouth-Hitchcock Medical Center and an author on EOL PC issues, noted that the word “compassion” means “to suffer with.” He added, “This field, after all, is the most life-affirming segment of American society. In order to affirm life, one needs to affirm all of life, and that includes the times we call illness, dying, death and grief.”
In reviewing the current state of EOL PC science, speakers presented some recent research findings, including:
- Improved communication between clinicians and family members in the ICU can decrease family stress and improve satisfaction with care.
- Early palliative care for patients with advanced lung cancer can improve satisfaction with care and quality of life and may even extend life.
- The Physician Orders for Life-Sustaining Treatment, a document that allows an individual with a serious illness to indicate the desired extent of treatment, is effective in communicating preferences for end-of-life care.
One highlight was a lunchtime session, “Parents and Clinicians as Partners in Research.” Speaker and parent advocate Dianne Gray described her interactions with clinicians and researchers as she dealt with the loss of her son at age 9 to a rare progressive neurologic disease. Dr. Cynda Hylton Rushton, a leading pediatric palliative care researcher and bioethicist, discussed ethical issues particularly relevant in pediatric EOL PC cases.
Noted Dr. J. Randall Curtis, a pulmonologist and intensive care physician at the University of Washington, “It is not enough to know what works if we can’t get it to happen at the bedside, in the home and in the community.”
Grady concluded, “We had the extraordinary opportunity to come together as researchers, providers, caregivers and advocates to envision a future in which research will unquestionably inform and improve the care for all who navigate the deeply personal journey of an advanced illness.”