1. Carroll, V. Susan
  2. Frei, Judith

Article Content

Forward: The International Academy of Nurse Editors (INANE) has a recurring commitment to providing information to the readers of its journals that addresses healthcare policy, critical needs, and disparities in healthcare across the globe and thought-provoking patient care issues and concerns. At their 2015 meeting, the editor members of INANE agreed to publish an editorial in their respective journals focused on end-of-life care.

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The Guest Editorial is co-authored by Susan Carroll, until recently JNN's Editor in Chief, and her colleague Judith Frei, an instructor at Rush University College of Nursing whose DNP project is focused on advance care planning.


Consider the expected demographic trends in the United States from now until 2050. The population of those over the age of 65 years will increase as the baby boomers retire. Current estimates suggest that, by 2050, the population of adults over the age of 65 years will increase to an astonishing 88,000,000 individuals. Furthermore, with age comes illness, usually in the form of chronic disease. In a survey of independently living adults receiving Medicare, the annual hospitalization rate and death rates were 20% and 5%, respectively (Gorina, Pratt, Kramarow, & Elgaddal, 2015). Despite images in media, the facts about death and dying remain constant. Most older adults will live with chronic illness for an extended period and usually die without decisional capacity (Institute of Medicine [IOM], 2014). To ignore these facts, and to avoid discussions about future care and end-of-life, leaves adults, their families, and healthcare providers at a loss as to how to provide care that matches the individual's values and respects his or her wishes.

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Yet, neuroscience nurses do not work only with older adults. Depending on the setting, neuroscience nurses may work with acutely or chronically ill patients across the life-span. Although many neurological disorders are responsive to treatment, others are less so, and some are simply devastating. Consequently, it is incumbent on us to listen to patients and families as they grapple with the quality of life and life-span consequences of neurological disorders. How then are neuroscience nurses to do this with practiced sensitivity in the absence of guidance and experience?


The Conversation Project ( is a place to start. With broad membership from media, clergy, healthcare, and the legal community and support of the IOM and the U.S. Institute for Healthcare Improvement, the Conversation Project's goal is simple: "make it easier to initiate conversations about dying, and to encourage people to talk now and as often as necessary so that their wishes are known when the time comes." Furthermore, the Conversation Project emphasizes the importance of a culture shift, from not talking about future care and end-of-life to talking about it, not only at the bedside of an ill loved one but also as part of usual conversation at home and in public.


We encourage all neuroscience nurses to review the Conversation Project. The Web site is easy to use and simple to read. It includes a conversation starter kit; stories submitted by people who have had, are planning on, or did not have a conversation; and a resource center with documents that may be used, modified, or shared. Beyond simply looking at the site, we encourage neuroscience nurses to have a conversation with a loved one using the starter kit. To become experts with our patients, we must first have had the conversation ourselves.


How can neuroscience nurses support conversations for our patients? The IOM's Dying in America recommendations provide a roadmap. We strongly encourage neuroscience nurses to be involved in policy issues that support expansion of advance care planning, palliative, and hospice services. Furthermore, we recommend that neuroscience nurses, especially those who interact with patients with advance serious illness, attend educational programs addressing end-of-life considerations for their population specialty. Respecting Choices, an evidence-based advance planning program developed by Gunderson Health Care, offers national conferences and Advance Care Planning Facilitator certification is one such program, and others exist as well (see Supplemental Digital Content 1, available at


Policy is important, no doubt, but at an individual level, neuroscience nurses must each be able to recognize when a patient is saying, often very subtly, "I have concerns about my future health." How many of us would recognize the following as an opportunity to explore the conversation?


* "My friend had deep brain stimulation. Do you think that will help me?"(concern about the future)


* "I'm not sure this treatment for glioblastoma multiforme will really help me." (worry about the future)


* "I don't think I can care for him much longer." (approaching a major change)



Could it be that, by not listening actively for subtle conversational hints, we become a barrier to the conversation (Ahluwalia, Levin, Lorenz, & Gordon, 2012)? Consider this fact, in most surveys of older adults, the vast majority have had some sort of conversation with family members, yet few have talked with their healthcare providers. It is incumbent on neuroscience nurses to "listen and share" as we support patients and families as they navigate the conversation.




Ahluwalia S. C., Levin J. R., Lorenz K. A., Gordon H. S. (2012). Missed opportunities for advance care planning communication during outpatient clinic visits. Journal of General Internal Medicine, 27(4), 445-451. doi:10.1007/s11606-011-1917-0 [Context Link]


Gorina Y., Pratt L. A., Kramarow E. A., Elgaddal N. (2015). Hospitalization, readmission, and death experience of noninstitutionalized Medicare fee-for-service beneficiaries aged 65 and over. National Health Statistics Reports,(84), 1-24. Retrieved from[Context Link]


Institute of Medicine. (2014). Dying in America: Improving the quality and honoring individual preferences near the end of life. Washington, DC: The National Academies Press. [Context Link]