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INTRODUCTION
In critical care settings, the importance of patient- and family-centered care cannot be overstated. Patient- and family-centered care is rooted in the principle of respecting the dignity of both patients and their families, ensuring information sharing, active involvement, and collaboration [1]. Given the frequent loss of decision-making capacity among critical care patients and their often unstable prognoses, ongoing communication between medical staff and families is imperative—with family conferences often serving as a pivotal starting point [2]. Family conferences represent a crucial process for determining care goals based on the hopes of both patients and their families and should involve active participation of medical staff and family members. This process goes beyond just delivering objective information regarding the patient's physical condition; it also explores the values and aspirations of the patient and family, assesses mental well-being, and demonstrates empathy [3,4]. While family conferences traditionally tend to be led by physicians [5], multidisciplinary collaboration is increasing. Nurses play an important role in family conferences, advocating for patients and families who may struggle to articulate their needs [6]. They also highlighted the crucial roles of nurses in psychological preparation before conferences, confirming comprehension afterward, and conducting additional interviews if necessary. However, studies by Khan [7], Ahluwalia et al. [8], and Pecanac and King [9] have revealed that critical care nurses often feel inadequately equipped to fulfill their expected roles in family conferences. In addition, specific aspects of the conference process in which nurses participate, the contents of discussions, and the frequency of post-conference follow-ups with patients and their families were not clearly delineated in these previous studies. Thus, this study aimed to elucidate the frequency with which family conferences are conducted, the content discussed, specialist nurses' beliefs regarding topics of discussion, follow-ups after such conferences, and beliefs concerning the locations where patients spend their end-of-life periods following decisions to discontinue life-sustaining treatments.
MATERIALS AND METHODS
Ethical Considerations
The Institutional Review Boards of Tohoku University (No. 2020-1-550) and Shinshu University (No. 4798) approved all phases of this study, which were conducted in accordance with the principles of the Declaration of Helsinki. Informed consent was obtained from all participants.
Study Design
Figure 1 is a flowchart detailing the study progression. This descriptive quantitative study was conducted using an anonymous, nationwide, self-administered, cross-sectional questionnaire conducted between October and December 2020. To increase the response rate, we sent two rounds of the questionnaire to each of the selected nurses. During the second distribution (which occurred two months after the first), a ballpoint pen was also included to facilitate survey completion.
Participant Sampling
Three types of critical care specialist nurses were selected: certified critical care nursing specialists (CCNS), certified intensive care nurses (CIN), and certified emergency nurses (CEN). All had undergone specific forms of advanced training and passed the associated certification examinations administered by the Japanese Nursing Association. These types of specialist nurses are required to have a minimum of 5 years of nursing experience in their respective fields, ensuring both knowledge and expertise. As a result, they are assumed to be capable of reflectively and objectively leading efforts to evaluate and improve the quality of critical care nursing in their institutions [10]. Since this study used a mailed questionnaire, nurses who were not identified by name or affiliated institution on the website of the Japanese Nursing Association were excluded. Nurses who did not work in hospital facilities were also excluded.
The sample size in this study was calculated using G*Power ver. 3.1 (Heinrich-Heine-Universität Düsseldorf) based on a total available population of 2,669 nurses (1,239 with CEN, 1,077 with CIN, and 353 with CCNS), an allowable error of 0.05, and a confidence level of 0.95—which resulted in a required sample size of 336 specialist nurses. The response ratio was estimated to be 0.45 based on a previous study [11]. A total of 427 nurses whose names or institutions were not listed on the Japanese Nurses Association’s website (accessed on June 1, 2020) or who were listed as not working in hospital settings was excluded. This exclusion resulted in a final population of 2,242 specialist nurses, from which 740 were randomly selected using the RAND function in Microsoft Excel.
Questionnaire
The questionnaire was developed according to previously established guidelines [12,13] and pilot-tested with five specialists—including a palliative care physician, intensivist, emergency physician, CCNS, and a researcher—who were recruited using snowball sampling. During the pilot test, specialists reviewed the questionnaire’s items using a clinical sensitivity rating scale (1=invalid, 2=somewhat invalid, 3=somewhat valid, and 4=valid). Any items rated 1 or 2 were revised by the researchers. The specialists then re-evaluated the clinical sensitivity of the survey, and all items with ratings between 3–4 were used to establish the final version of the questionnaire.
Nurse Engagement in Family Conferences to Set Treatment and Care Goals
The extent to which specialist nurses typically engaged in family conferences that focused on treatment and care goals, as well as withholding or withdrawing life-sustaining treatments, was assessed using six items rated on a scale of 1–4 (1=never, 2=rarely, 3=sometimes, 4=always). The six items were as follows: “Participating in family conferences addressing treatment and care goals,” “Documenting family conferences addressing treatment and care goals,” “Documenting the process of withholding or withdrawing life-sustaining treatment,” “Repeatedly discussing with physicians the possibility of restarting treatments after decisions to withhold or withdraw life-sustaining treatments,” “Ensuring patient and/or family understanding following family conferences,” and “Confirming whether any changes have been requested regarding decisions to withhold or withdraw life-sustaining treatment for patients and/or their families.”
Suggested Versus Actual Content of Family Conference Discussions
Participants were asked about the contents of their discussions during family conferences focused on treatment and care goals. The opinions of the nurses regarding the content that should be discussed among medical staff, patients, and families were also solicited and included “anticipated clinical course,” “desired treatment and care,” “patient prognosis,” “selection of a surrogate decision-maker,” “withholding or withdrawing treatment,” “the family’s physical, psychological, and social challenges,” “preferred care settings for the patient and/or family,” “the patient’s advance care planning or advance directives,” and “the patient’s philosophy, values, dreams, and hopes.”
Withholding or Withdrawing Life-Sustaining Treatments
Respondents were then asked about their beliefs regarding withholding or withdrawing life-sustaining procedures to avoid unnecessary patient suffering. Such procedures included “chest compressions,” “extracorporeal circulation devices,” “ tracheal intubation,” “invasive mechanical ventilation,” “invasive monitoring devices,” “hemodialysis,” “blood culturing,” “vasopressors,” “blood transfusion,” “ arterial blood gas analysis,” “non-invasive mechanical ventilation,” “blood glucose measurement,” “venipuncture,” “enteral nutrition,” “antibiotic therapy,” “intravenous maintenance fluid therapy,” “non-invasive monitoring devices,” and “oxygen therapy.”
Appropriate End-of-Life Settings
In Japan, familial visits in critical care settings are restricted to a greater extent than in general wards, and this was true even before the coronavirus disease 2019 (COVID-19) pandemic [14-16]. With this in mind, our respondents were asked to rate their level of agreement, on a scale of 1–6 (1=strongly disagree, 2=disagree, 3=somewhat disagree, 4=somewhat agree, 5=agree, 6=strongly agree) regarding possible locations for hospital patients to spend end-of-life periods. The suggested answers were: “transferring the patient from the emergency department (ED) or intensive care unit (ICU) to a general ward” and “transferring the patient from the ED or ICU to a private room in a critical care setting.”
Participant Demographics
Demographic characteristics recorded for the respondents were sex, age, years of nursing experience, years of critical care nursing experience, position title, and number of hospital beds under their care. Information was also collected regarding palliative care education—such as end-of-life nursing education from the Japanese Critical Care consortium, in-hospital training by palliative care specialists, and other forms of education focused on end-of-life discussions.
Statistical Analysis
Descriptive analyses were conducted for all variables. Continuous variables are expressed as means and standard deviations (SDs), while categorical ones are expressed as numbers and percentages. All analyses were conducted using EZR software (Saitama Medical Venter; Jichi Medical University).
RESULTS
A total of 396 questionnaires was returned (53.5%), of which 12 were excluded from the analysis because of failure to provide the required demographic information, leaving 384 completed questionnaires (51.9%) in the final analysis.
Participant Characteristics
Table 1 presents the demographic characteristics of the specialist nurses who responded to the survey. Most were female (72.1%), and 55.2% worked in the ICU. Mean years of nursing experience was 20.9 years (SD, 6.5), and mean years of critical care nursing experience was 13.3 years (SD, 5.6).
Nurse Engagement in Family Conferences to Set Treatment and Care Goals
Figure 2 shows the responses in terms of participating in and documenting family conferences, as well as post-conference engagement among physicians, patients, and families. Those who always participated in family conferences comprised 28.1% of the cohort, whereas those who sometimes participated accounted for 51.3%. A total of 18.8% always discussed resumption of treatments with physicians after decisions had been made to withhold or withdraw life-sustaining treatments. Additionally, 33.6% of the nurse respondents always ensured that patients and/or their families fully understood the discussions that took place at family conferences, and 23.3% actively enquired regarding changes in decisions to withhold or withdraw life-sustaining treatments.
Suggested Versus Actual Content of Family Conference Discussions
Figure 3 details the actual topics discussed between medical staff and patients and their families during family conferences versus the topics that specialist nurse respondents felt should be discussed. Main topics discussed during family conferences were “anticipated clinical course (78.47%),” “hopes for treatment and care (75.0%),” and “patient prognosis (65.1%).” By contrast, the contents that specialist nurses believed should be discussed were “the patient’s philosophy, values, dreams, and hopes (73.7%)” and “the patient’s advance care planning and/or advance directive (72.7%)”. These topics were discussed in 24.2% and 30.2% of actual family conferences, respectively.
Withholding or Withdrawing Life-Sustaining Treatments
Figure 4 shows the procedures that the participants believed should be withheld or withdrawn when life-sustaining treatments become medically futile. More than 80% responded that the following procedures should be discontinued: “chest compressions (94.5%),” “extracorporeal circulation devices (88.8%),” “tracheal intubation (84.1%),” and “invasive mechanical ventilation (83.9%).” Conversely, fewer than 30% of respondents felt that the following procedures should be discontinued: “blood glucose measurement (29.2%),” “venipuncture (25.8%),” “enteral nutrition (17.5%),” “intravenous maintenance fluid therapy (14.3%),” “non-invasive monitoring devices (5.0%),” and “oxygen therapy (3.4%).”
Appropriate End-of-Life Settings
Table 2 shows the responses of the participants regarding the most appropriate settings for patients to spend end-of-life periods following the decision to discontinue life-sustaining treatments. The proportions who strongly agreed or agreed with the notion of transitioning patients from critical care settings to general wards were 13.0% and 26.0%, respectively. Regarding transitions to private rooms in critical care settings, 46.4% and 35.2% of the respondents indicated that they strongly agreed or agreed with the idea, respectively.
DISCUSSION
This study clarified the levels of engagement and perspectives of critical care specialist nurses concerning conferences with families of patients to address treatment goals and life-sustaining treatments during end-of-life scenarios. Two major findings emerged: (1) Japanese critical care specialist nurses showed variability in the extent to which they fulfilled their expected roles in family conferences and (2) our cohort of Japanese critical care specialist nurses generally agreed that patients should be transferred to general wards or private rooms, and that invasive oxygen-related and circulatory management procedures should be discontinued when life-sustaining treatments became medically futile.
Though family conferences are inter-professional collaborative efforts, nurses have several roles in the process, including pre-conference planning, providing information, liaising and translating, providing emotional support, achieving consensus, and following-up with patients and/or their family after the conference [17-19]. However, Bloomer et al. [20] reported that only up to 25% of critical care nurses always participated in family conferences; similarly, Watson and October [21] reported that only up to 17% of nurses always participated in family conferences. While the participants of these previous studies included critical care staff nurses, our survey targeted specialist nurses, resulting in a slightly higher participation rate compared to previous studies; however, it was still less than 35%. In previous studies, low participation rates have been attributed to the high workloads of nurses and the challenges of leaving patients’ bedsides when their conditions become unstable. Moreover, in Japanese critical care settings, heavy workloads represent a significant barrier to adequate family care [11]. Based on these prior findings, it is plausible that workload could have influenced the limited participation of nurses in family conferences in our study; however, our study was not designed to identify specific factors that act as barriers to participation in these conferences. Future studies should aim to explore the specific barriers faced by specialist nurses regarding their participation in family conferences and develop strategies to enhance their participation rates in these conferences.
We found that specialist nurses understood that the most important aspects to be discussed among medical staff and patients and/or families were the patients’ values, life histories, and preferences. However, in this study, the actual content of family conference discussions focused primarily on physical aspects of the patients. This discrepancy, where critical elements of discussion are overlooked, was highlighted more than 20 years ago in a survey of physicians by Curtis et al. [5] and remains an unresolved issue. Previous studies by Khan [7] and Ahluwalia et al. [8] have reported that, while critical care nurses understand their roles in family conferences, they often feel unable to advocate for the rights of patients and their families. Instead, they feel constrained to serve as intermediaries, bridging communication gaps between patients' families and physicians. As an initial step toward addressing this issue, educational programs are needed to enhance critical care nurses' knowledge of their roles and encourage collaboration with physicians. Moreover, it is essential for physicians to recognize the importance of cooperating with critical care nurses throughout the family conference process. Inter-professional workshops that foster mutual understanding of roles could be a valuable approach.
In a study conducted a decade ago involving physician councils of the Japanese Society of Intensive Care Medicine, more than 50% of the respondents reported experiences with withholding or withdrawing treatments such as extracorporeal membrane oxygenation (ECMO), intra-aortic balloon pumping (IABP), continuous renal replacement therapy (CRRT), vasopressors, nutrition, and antibiotic therapies for patients in end-of-life scenarios [22]. Our study revealed similar trends among specialist nurses, with some differences. Specifically, most nurses in our cohort agreed that withholding or withdrawing ECMO, IABP, and CRR—which are generally considered excessively invasive for end-of-life patients—was appropriate. However, fewer nurses supported withholding or withdrawing nutritional or antibiotic therapies. In Japan, over half of intensivists reported that they made decisions and/or discussed withholding or withdrawing treatments for patients at end-of-life stages either alone or along with other physicians. This number was higher than the proportion who reported having similar discussions with inter-professional medical staff [23]. These findings suggest that discussions regarding treatment goals for end-of-life patients that only involve physicians and nurses may be insufficient. Flannery et al. [24] highlighted differences in values between physicians and nurses regarding end-of-life decision-making: ICU physicians tend to focus on meeting the needs of patients' families, whereas ICU nurses often advocate for the patients themselves. To provide optimal care, it is essential to align the values of physicians and nurses. One potential approach is to implement communication methods that facilitate mutual understanding, such as having each party document their perspectives before engaging in joint discussions.
Our study also found that more than 70% of the nurses we surveyed recognized the necessity of transitioning end-of-life patients to general wards or private rooms when discontinuing life-sustaining treatments. Many ICUs and EDs in Japan have stricter visitation restrictions than general wards, making it more difficult to respond flexibly to family requests for visits [15]. This reality existed even before the recent COVID-19 pandemic and continues to do so. Therefore, in Japan, critically ill end-of-life patients are occasionally transferred to general wards with the cooperation of general ward staff. Transferring patients to general wards can allow easier family access, which can be meaningful for patients and their families. However, it is not sufficient to simply transfer patients; continuity of care between ICUs and general wards is also essential [25]. Additionally, ICU and ED nurses face challenges in terms of directly caring for patients and their families who are transferred to different wards. One effective approach to ensure continuity of care is collaboration with palliative care teams during ICU or ED admissions and maintaining these collaborations even after patients are transferred to general wards.
Finally, our study also found that less than 20% of specialist nurses ensured or discussed follow-ups with physicians regarding restarting treatments, less than 35% of specialist nurses ensured patients’ and families’ understanding after conferences, and less than 25% of specialist nurses confirmed whether decisions changed post-conference. Pecanac and King [9] similarly reported that follow-up by critical care nurses with families after conferences was insufficient. Given the constantly changing conditions of critically ill patients, continuous reassessment of treatment goals is crucial. Treatment decisions are often accompanied by uncertainty, especially when prognoses are unclear, and it is not surprising that they may require revision [26]. Ongoing discussions among critical care nurses, physicians, patients, and families are essential to ensure that treatment goals remain appropriate.
This study has several limitations. First, participants were critical care specialist nurses, which may limit the generalizability of our findings to the engagement of other types of Japanese critical care nurses in family conferences. Second, this study used a self-reported questionnaire, meaning that the results were based on subjective information. Future studies should collect prospective data regarding the actual number of family conferences held and their focuses. Additionally, to identify the reasons why nurses are sometimes unable to participate in family conferences and develop measures to address them, surveys should be conducted to collect and analyze data on the timings of family conferences, staffing levels during the relevant periods, and the severity of patient illnesses.
KEY MESSAGES
▪ While critical care nurses are expected to fulfill various roles throughout the care process—including pre-conference preparation, advocating for families during conferences, and conducting post-conference follow-ups—there appear to be gaps in their fulfillment of these roles.
▪ Nurses' levels of engagement in family conferences could be improved by holding joint study sessions with physicians and other professionals based on basic education regarding the roles of critical care nurses.
▪ To facilitate easier family visits during end-of-life scenarios, patients should be transferred from critical care settings to general wards and ensured continuous care.
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