In the February 2016 issue of Critical Care Nurse (CCN), the title of my editorial1 posed an intentionally disquieting question intended to prompt readers’ self-reflection on how they envisioned the last weeks and days of their life. More specifically, it inquired about their preferences for the type and location of care they received at life’s ebb: “When it’s your time, will it be your way?” The remainder of that editorial reviewed the Institute of Medicine’s definition of comprehensive end-of-life (EOL) care as both patient-centered and consistent with one’s goals and preferences,2 described the benefits and challenges associated with advance directives, explored both physician and nurse attitudes toward and disregard of existing advance directives, and implored critical care providers to honor their patients’ expressed preferences and to ensure that their own wishes were documented, current, and communicated. We have no published information about critical care nurses’ perspectives on this topic, so the editorial ended with a 2-item survey to solicit that. This issue of CCN is devoted to the theme of futile and EOL care, so it seems an appropriate place to provide a report on the findings of that survey.
The 2 questions included in CCN’s EOL Preferences Survey were the following:
If you had a terminal condition with death anticipated within 6 months, which of these EOL care options would you prefer for yourself?
Go home with comfort measures or hospice, as necessary, but no cardiopulmonary resuscitation or extraordinary measures
Remain in whichever health care facility is necessary to receive all available medical therapies that could possibly extend my life
Do you have an advance directive that identifies your EOL preferences?
Critical Care Nurse typically uses its website to locate information, resources, and other material related to content in the print edition. Unfortunately, at the time this survey was published in the print edition, our website was not available to employ for this purpose. As an alternative, we offered an email address for submission of survey replies. That option seemed to work well for receipt and acknowledgment of all replies.
We were pleased to receive replies to this survey from CCN readers, but disappointed that these numbered so few: a total of only 31 replies were received. To keep the survey as brief as possible, no demographic information was solicited from survey participants, so we are unable to describe those attributes.
All of the survey participants (n = 31) responded to both items.
If you had a terminal condition with death anticipated within 6 months, which of these EOL care options would you prefer for yourself? This item elicited a nearly universal response; 30 of 31 responses identified option a (“Go home with comfort measures or hospice, as necessary, but no cardiopulmonary resuscitation or extraordinary measures”) as their preference for EOL care. A single participant selected option b (“Remain in whichever health care facility is necessary to receive all available medical therapies that could possibly extend my life”).
Do you have an advance directive that identifies your EOL preferences? This item generated greater variance in responses. Of the 31 respondents, 21 (68%) indicated option a, the Yes response, whereas 10 (32%) indicated option b, the No response.
The small number of respondents to this survey pretty much nullifies the validity or reliability of the results in any meaningful way, except perhaps as a pilot for another attempt that generates a genuinely representative proportion of practicing critical care nurses. That said, a few unscientific observations might be shared from this tiny volume of input:
Virtually everyone who took the time to respond to the survey identified “Home” as the place they prefer to be in their final hours. That finding is consistent with data drawn from the multiple studies with representative samples of both physicians and nurses that were identified in the February 2016 editorial as well as from polls of the general public.
One participant described their goal clearly and succinctly as “Go home and live out the rest of my life in as much comfort as possible with my loved ones. I would do everything possible to stay out of the hospital.”
In this small sample, more than two-thirds of respondents indicated that they already had an advance directive prepared that included their EOL preferences. As an unscientific poll, this finding may also suggest that critical care nurses who have already addressed this issue in their own lives were more likely to respond to the survey than those who have not given it thoughtful consideration. Self-selection can easily affect survey results and needs to be considered in even a rudimentary analysis such as this.
One respondent suggested that “more people should take advantage of the Medical ID in the Health Kit on iOS devices,” explaining that health care providers can access the Medical ID from the lock screen on an iPhone to reach emergency contacts even if the patient is unable to communicate.
Other respondents reported that the survey prompted them to update their existing advance directive; facilitate other nurses’ completion of advance directives during Nurse Week; secure a family member who would follow their expressed EOL preferences in addition to their spouse (who indicated some reluctance to do so); and discuss the editorial at their Journal Club meeting, where they would also distribute copies of their state advance directive form and invite a social worker to discuss the form with nursing staff.
Although no scientific conclusions can be legitimately drawn from a survey this small, knowing that even a few facilities have now launched meaningful efforts toward getting more critical care nurses to confront, consider, decide, and document their EOL preferences is encouraging. When you next encounter a patient situation in which the lack of an advance directive creates confusion or stymies development of a clear plan of care, remember that patient could be you. If we don’t know what you want for care when the end of your life draws near, there is no way to ensure that your wishes are respected and followed. Let those who love you know where you want to be, what you want and do not want for care, and let all of your critical care colleagues know your wishes by preparing an advance directive and issuing a copy to whomever will be making decisions on your behalf.
Wishing you a healthy and safe and joyous holiday season with those you love.