https://orcid.org/0000-0001-7591-0736
Figures
Abstract
Introduction
In Japan, end-of-life care in intensive care units (ICU) remains inconsistent and often suboptimal, contributing to variability in the quality of dying and death. This study aimed to develop a culturally appropriate nurse-led intervention program to improve the quality of dying and death in Japanese ICU.
Methods
Using a structured framework for intervention development, we conducted a systematic and scoping review to identify modifiable factors and effective strategies for end-of-life care in ICUs. Eight evidence-based strategies were synthesized into four core components: symptom management, multidisciplinary bedside conferences, family conferences, and end-of-life care. A preliminary intervention program was developed and evaluated through expert interviews and web-based surveys to assess its clarity, feasibility, and alignment with the Japanese healthcare system.
Results
Based on expert feedback, revisions were made to enhance the clarity, feasibility, and alignment with the Japanese healthcare system. Key improvements included initiating symptom management early upon ICU admission, allowing flexible scheduling of conferences, and incorporating structured tools and frameworks commonly used in Japan. Additionally, a ladder-based system was introduced to tailor the intervention intensity according to the patients’ clinical conditions.
Conclusion
The final nurse-led intervention program was designed to facilitate more consistent delivery of end-of-life care in the ICU regardless of individual providers’ knowledge or attitudes. This study demonstrates a rigorous and culturally adapted intervention development process that may serve as a model for improving end-of-life care in ICU in Japan and other healthcare systems.
Citation: Naya K, Sakuramoto H (2026) Development and external validity of a nurse-led intervention program to improve palliative care and quality of dying and death in intensive care unit. PLoS One 21(4): e0346585. https://doi.org/10.1371/journal.pone.0346585
Editor: JONATHAN BAYUO, The Hong Kong Polytechnic University, HONG KONG
Received: September 23, 2025; Accepted: March 21, 2026; Published: April 10, 2026
Copyright: © 2026 Naya, Sakuramoto. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Data Availability: All relevant data are within the manuscript and its Supporting Information files.
Funding: This study was supported by a Grant-in-Aid for Scientific Research (C) from the Japan Society for the Promotion of Science (Grant number 25K13875). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Competing interests: The authors have declared that no competing interests exist.
Introduction
The intensive care unit (ICU) is primarily designed to treat patients with critical illnesses who have the potential for recovery; however, owing to illness severity, ICU mortality remains high. In settings where life-saving interventions are prioritized, it is often difficult to create an appropriate end-of-life (EOL) environment, and adequate EOL care is not consistently provided [1]. A comparison of the Quality of Dying and Death (QODD) assessed by bereaved family proxies between ICU and hospice settings revealed that patients in the ICU have significantly lower QODD scores than those in hospice settings [2]. Notably, scores for pain control (ICU: 2.1 ± 2.1; hospice: 5.3 ± 3.1; P = 0.001) and breathing comfort (ICU: 2.1 ± 2.7; hospice: 4.1 ± 3.0; P = 0.032) were markedly lower in the ICU group than in the hospice group. The key factors associated with QODD include the presence of advanced directives, effective communication with families, and support for decision making [3].
In the ICU setting, patient prognosis at admission is often uncertain, and may change over time. Many patients who die in the ICU initially receive aggressive, life-sustaining treatments with the expectation of recovery. Therefore, discussions regarding patient values, preferences, and advance directives should be initiated early after ICU admission and revisited as clinical conditions evolve. Inadequate symptom control is a major contributor to poor QODD [4], and ICU patients frequently experience significant unrelieved physical and psychological distress [5]. Accordingly, palliative care should be provided to all ICU patients regardless of their prognosis. Although ICU palliative care initially focused on EOL care, it is now understood to encompass symptom management, shared decision-making, and support for patients and their families throughout the course of the critical illness [6].
Although various interventions have attempted to improve QODD, few have systematically integrated multiple strategies to address its complex determinants [7]. In Japan, research focusing on the EOL care for ICU patients and their families is scarce. One study reported that patients with terminal cancer in Japanese ICUs received lower-quality EOL care than those in palliative care units, citing insufficient knowledge and skills among physicians and nurses [8]. Additionally, a multicenter cross-sectional study found that the use of a high-flow nasal cannula may improve symptom relief and QODD at the EOL [9]. Despite these insights, culturally and systematically appropriate interventions for ICU EOL care remain underdeveloped in Japan.
This study aimed to develop an intervention program to improve QODD in Japanese ICUs, guided by the Six Steps in Quality Intervention Development (6SQuID) framework [10] and adapted to Japan’s healthcare system and cultural context.
Methods
The intervention program was systematically developed based on the first four steps of the 6SQuID framework [10], as illustrated in Fig 1. Initially, we conducted a systematic review and meta-analysis (SR/MA) [3] and a scoping review (ScR) [7]. The findings from these reviews were synthesized and applied in Steps 1–3. Step 4 involved drafting a preliminary version of the intervention program and assessing its internal and external validity. Based on the results, the program was revised and finalized.
The study protocol was approved by the Ethics Committee of the Japanese Red Cross Kyushu International College of Nursing (Approval No. 24−014, Approval Date: July 3, 2024). The participants were recruited between July 3 and July 11, 2024. All participants gave consent to participate before starting the focus group interviews (FGI) and Web-based surveys. Reviewing the explanatory document and submitting the consent form were regarded as provision of consent. They were also informed that their participation was voluntary and that they could withdraw at any time without penalty.
Literature review of QODD in the ICU
STEP 1: Define and understand the problem and its causes.
A review of the existing literature revealed a clear need for both clinical and academic interventions to improve QODD in ICU settings. The underlying causes of suboptimal EOL care were analyzed to identify the key contributing factors.
STEP 2: Clarify which causal or contextual factors are malleable and have the greatest scope for change.
We identified the modifiable causes and contextual factors with the highest potential for impact. In cases where causal pathways were complex and interrelated, we pinpointed critical intervention points either to disrupt causal chains or apply multilevel strategies. We also assessed the changes likely to produce the greatest improvements in QODD.
Developing the intervention program
Developing a preliminary version of the intervention program.
STEP 4: Identify how to deliver the change mechanism. A preliminary intervention program was constructed by incorporating the change mechanisms identified in Step 3. To assess validity, both internal and external evaluations were conducted through FGIs with experts and a web-based expert survey.
Externally validating a preliminary version of the intervention program.
- (1) FGI with experts
An FGI was conducted to evaluate the internal and external validity of the preliminary program. Snowball sampling was used to recruit the experts. Individuals were eligible to participate if they met the inclusion criteria (a), (b), or (c) and did not meet any of the exclusion criteria. The eligibility criteria were as follows: (a) physicians or nurses with at least five years of experience working in ICUs; (b) nurses certified in intensive care, certified nurse specialists in critical care nursing, educators, and researchers specializing in intensive care; and (c) physicians involved in palliative care or EOL care in the ICU. The exclusion criteria were as follows: (d) participants with no experience in palliative or EOL care in the ICU, (e) participants with a conflict of interest related to this study, (f) participants who were unable to provide informed consent, and (g) participants who had experienced the loss of a family member within the past six months. Since early bereavement reactions and psychological symptoms tend to be most pronounced within the first six months following loss [11], these individuals were excluded to minimize psychological distress and avoid triggering recollection of recent bereavement.
Interviews were conducted remotely via videoconferencing. Audio recordings were transcribed verbatim and reviewed multiple times. Common themes were identified and synthesized. Revisions of the preliminary program were based on expert feedback. Qualitative saturation was achieved when no new themes or suggestions relevant to the refinement of the intervention program emerged during the later stages of the FGI. To ensure trustworthiness of the content analysis, the data were reviewed repeatedly by two researchers and supervised by a qualitative research expert. The raw data were rechecked to ensure accuracy. Additionally, the analyzed data were verified with the participants to ensure that their statements were accurately reflected and that no additional opinions were omitted. The revised version was defined as the “modified intervention program.” The interview guidelines are presented in Table 1.
- (2) Web-based survey with experts
Content validity of the modified program was assessed using a web-based expert survey. The survey items are presented in Supporting Information (see S1 Text). The process was as follows: (a) Experts were provided with the FGI data together with the modified program and then asked to evaluate the alignment between the revisions and FGI findings. (b) Quantitative evaluation was conducted using Lynn’s method [12] and the content validity index (CVI) was calculated. Qualitative comments were also collected. (c) Items were rated on a four-point scale (4 = valid, 3 = fairly valid, 2 = somewhat lacking validity, and 1 = not valid). The item-level CVI (I-CVI) was calculated as the proportion of items with a score of three or four, with ≥0.78 set as the threshold for acceptable content validity. (d) Items with I-CVI < 0.78 were revised using qualitative feedback. This evaluation–modification cycle was repeated until all items reached I-CVI ≥ 0.78.
Sample size for FGI
Based on a previous study [13], we targeted a focus group of six to eight participants.
Results
Literature review of QODD in the ICU
STEP 1: Define and understand the problem and its causes.
The SR/MA results identified multiple factors associated with improved QODD in the ICU. These included the absence of cardiopulmonary resuscitation at EOL, death without the use of full life-sustaining measures, provision of a therapeutic environment, effective symptom management, and preservation of patient dignity (e.g., optimal control of physical symptoms, management of events, and maintenance of self-respect). These findings suggest that interventions aimed at promoting dignity and comfort among ICU patients may improve the quality of EOL care in this setting [3].
STEP 2: Clarify which causal or contextual factors are malleable and have greatest scope for change.
The ScR identified 10 intervention strategies to improve QODD [7]. Among these, “family participation in bedside rounds” and “feedback on EOL care for healthcare workers” were excluded because of insufficient supporting evidence, thus resulting in the selection of eight strategies. A substantial gap in evidence has been noted regarding symptom management, underscoring the need to develop intervention programs that specifically target this aspect.
STEP 3: Identify how to bring about change (the change mechanism).
To improve QODD in the ICU, we identified eight evidence-based intervention strategies, grouped into four core components. For each strategy, we articulated the underlying mechanisms by which these changes were expected to occur.
- (1) Evidence-based symptom management
Improving the control of distressing symptoms (e.g., pain and agitation) reduces physical suffering, thereby directly enhancing patient comfort and dignity, which are the core domains of QODD.
- (2) Multidisciplinary bedside conference
Regular interdisciplinary communication fosters shared decision-making and early palliative care. This improves goal-concordant care and symptom management, leading to improved QODD.
- (3) Family conference
Early and structured family meetings support informed surrogate decision making, thus reducing unnecessary invasive treatments, and increasing family satisfaction. These are correlated with an improved QODD.
- (4) EOL care
Emotional support and honoring patient/family wishes during the dying process reduce treatment intensity, align care with values, and preserve dignity, thus leading to improved QODD.
Developing the intervention program
Developing a preliminary version of the intervention program.
STEP 4: Identify how to deliver the change mechanism. Based on these eight intervention strategies, we developed a preliminary nurse-led intervention program to improve palliative care and QODD in ICU. Rather than following a ladder-based approach, the intervention was designed with a time- and condition-dependent flow of care. Patients were screened based on their clinical status over time and subsequent steps in the intervention proceeded according to this screening, creating a structured flow throughout the ICU stay. A flow diagram was developed to visually guide the practice.
Given the complexity of transitioning from curative to EOL care in modern ICUs, it was necessary to identify appropriate patients at an early stage, rather than focusing only on those who are near death. Therefore, primary screening criteria were established to identify eligible patients from among all ICU admissions. Once identified, evidence-based symptom management was initiated on ICU admission. For these patients, multidisciplinary bedside conferences were held within 24 h to clarify the goals of care and discuss treatment strategies. This step enabled the early planning of family conferences and timely initiation of EOL care. Nurses closely involved in daily patient care serve as key agents of the program. Their roles in symptom assessment, patient identification, and coordination of multidisciplinary meetings were explicitly defined and formally integrated into the intervention procedures. The intervention program was compiled into a booklet including an intervention flow diagram and designed for distribution to the departments participating in the intervention.
Externally validating a preliminary version of the intervention program
Six experts conducted the FGI and web surveys. Based on the FGI results, the preliminary program was modified, and the validity of these modifications was assessed through a web survey. The experts included two physicians and four nurses, all of whom were clinical nurses in the ICU as well as educators and researchers in palliative care and symptom management (Table 2).
Validation by FGI for experts
The expert feedback was categorized into the following areas: scope and selection of target populations for the intervention program (Table 3), strategies to enhance the feasibility of the intervention, incorporation of evidence from Japan, and refinement of terminology and wording (Table 4).
- (a) Scope and selection of target populations for the intervention program
Regarding the selection of target populations for the intervention program, some experts expressed concern about the inclusion of patients with non-terminal illnesses and noted a potential inconsistency with the program’s stated aim of improving the QODD. They highlighted that, “Including patients who are not in the terminal stage in a program designed to improve the quality of dying and death was considered inappropriate.”
Conversely, there was a consensus on the importance of including patients outside the terminal phase, particularly because the core symptom management component of the intervention program should be provided to all patients in the ICU, and not only to those who are terminally ill. In essence, “Symptom management should be provided to all patients, not only those in the terminal stage; therefore, non-terminal patients should be included.”
Regarding patient selection, it was proposed that a primary screening item should be used at the time of ICU admission to identify critically ill patients who may benefit from an intervention program. However, some experts noted the absence of a clear process for determining the transition to EOL care during this initial screening: “The initial screening criteria are appropriate because they enable the identification of severely ill patients. A process may be needed during the initial screening stage to determine whether end-of-life care is appropriate.”
The primary screening items were revised in response to these comments, and the intervention process, which originally followed a time- and condition-based flow, was reorganized into a stepwise ladder-like format (Fig 2). This allowed for the initiation of symptom management from the time of ICU admission without altering the overall target population specified in the intervention program.
Following this reorganization, explicit operational criteria were defined for transitions between ladder levels (Fig. 2). Ladder I was initiated for patients who required, or were highly likely to require, mechanical ventilation for more than 48 hours, or who were admitted emergently from a general ward. The transition from Ladder I to Ladder II was considered when the patient’s condition deteriorated or the response to treatment was judged to be poor. Nurses conducted this assessment during daily symptom management conferences. The transition from Ladder II to Ladder III was determined when life-saving treatment was judged difficult and the likelihood of death was extremely high. This decision was made by the nurses during multidisciplinary bedside conferences. In cases of rapid clinical deterioration or an extremely poor response to treatment, a direct transition from Ladder I to Ladder III was permitted. All screening and transition decisions were nurse-led and reassessed based on changes in the patient’s clinical condition.
- (b) Strategies to enhance the feasibility of the intervention and incorporation of evidence in Japan
Feedback was provided on “evidence-based symptom management,” “multidisciplinary bedside conferences,” “family conferences,” and “EOL care” in relation to strategies for enhancing the feasibility of the intervention, the incorporation of evidence from Japan, and the refinement of terminology and wording.
Evidence-based symptom management
Regarding symptom management, the importance of initiating daily symptom management early in the ICU stay was emphasized: “Prompt initiation of symptom management upon ICU admission is essential. Is the frequency of the “Symptom Management and Palliative Care Conference” appropriate? It should be conducted daily.” In response, the post-screening flowchart was revised to ensure that symptom management was initiated early during ICU admission.
To enable daily symptom management conferences, they were permitted to be incorporated into the existing rounds and meetings. Furthermore, the tools for objective symptom assessment were revised to increase versatility by including instruments that are more commonly used in Japan and avoiding restrictions on the choice of tools.
“Some listed assessment tools (e.g., the Japanese version of the Respiratory Distress Observation Scale) are not widely used in Japan; should alternatives be allowed? The contents of Japan’s clinical practice guidelines for dry mouth can serve as a reference.”
Multidisciplinary bedside conference
Owing to variations in ICU systems across facilities (e.g., open ICUs, closed ICUs), some experts noted the challenges related to physician participation in conferences and the difficulty of holding such meetings in a timely manner: “Holding the initial conference within 24 h of ICU admission is difficult for attending physicians. It is challenging for attending physicians to participate in the conferences while in open ICUs. ICU physicians cannot independently set treatment goals without the attending physician’s presence.”
In response to these concerns, the target population for multidisciplinary bedside conferences was revised from “all patients” to “patients at Ladder II or above.” Additionally, the timing of the first conference was modified from “within 24 hours of ICU admission” to “within 3 days of the start of Ladder II,” thus allowing for greater flexibility and improving feasibility.
To standardize the content of multidisciplinary conferences and enhance their feasibility, Jonsen’s four-topic approach, which is commonly used in Japan, was adopted as the framework. This modification reflected expert feedback, including the following: “The content should be simplified using a framework such as Jonsen’s four-box method. Given the current shortage of interprofessional conferences, the content should be structured to support regular implementation.”
Family conference
Challenges regarding the feasibility of a fixed schedule were identified: “Conducting family conferences at the designated times can be challenging.” Therefore, the need for a family conference was assessed during the multidisciplinary bedside conference, and the timing was adjusted to “as soon as possible, after the multidisciplinary bedside conference determines that a family conference is necessary,” to allow for greater flexibility in implementation.
In addition, the need for education for health care providers regarding communication skills in preparation for holding conferences with families was noted: “Healthcare providers may require training in conducting family conferences.” Therefore, a guide for communicating with patients and their families was added as a supplementary document.
EOL care
In response to expert feedback, the purpose, timing, and responsible providers of EOL care were specified to ensure that interventions are conducted at the appropriate time (i.e., “who will do it and when?”).
Additionally, in response to feedback regarding the need to adjust the treatment environment, the EOL care section was revised to include the relaxation of visitation restrictions and consideration of transfer to a general ward. “It may be beneficial to include information regarding the removal of unnecessary lines, the easing of visitation restrictions, and the potential transfer to a general ward.”
For family grief care and emotional support, content was added based on the Practice Guide for End-of-Life Nursing in Emergency and Intensive Care, which was developed by the Japanese Society of Critical Care Nursing in 2019. “It may be advisable to include information on grief care and psychological support for families, referencing the Practice Guide for End-of-Life Nursing in Emergency and Critical Care.”
Validation via a web-based survey of experts
Following the FGI, the preliminary program was revised and validated using a web-based survey involving the same six experts. The survey was designed to obtain both quantitative assessments of the revised items and qualitative feedback on the proposed modifications. All modified items achieved an I-CVI of 0.78 or higher, thereby confirming their content validity (Table 5). Detailed item-level CVI ratings for each expert are provided in Supporting Information (see S2 Text).
Based on the FGI results, the intervention ladder was categorized into Stages I–III. A process was initially established to transition from Ladder I or II to “Ladder III: End-of-Life Care” when the criterion “The patient or surrogate decision-maker has requested the withholding of treatment” was met. However, in response to qualitative feedback from the experts, this additional criterion was removed. Experts noted that “withholding” includes both the withholding and withdrawal of treatment, and that such decisions do not necessarily reflect an EOL situation.Consequently, the screening criterion for transitioning to Ladder III was simplified to a single item: “Difficult to save and very likely to die.” Further expert feedback highlighted that the term “surrogate decision-maker” is not legally defined in Japan, and that a “key person” does not necessarily equate to a surrogate decision-maker. In this context, it was noted that a surrogate decision-maker may not be a single designated individual but could instead comprise multiple individuals or families. In addition, the description of advanced directives was revised to include both oral and written forms rather than limiting them to written documentation.
The finalized Nurse-Led Intervention Program to Improve Palliative Care and Quality of Dying and Death in the Intensive Care Unit is presented in S3 Text, and the screening and conference items are provided in S4 Text.
Discussion
This study utilized existing evidence identified through SR/MA and ScR to develop a nurse-led intervention program to improve palliative care and QODD in the ICU. Given the lack of interventions targeting symptom management [3,7] despite its recognized importance in improving QODD in ICU patients, a provisional intervention program was initially developed with a focus on symptom management. This provisional program underwent internal and external validation through FGI with experts, resulting in a revised version that aligned with the feedback obtained. The FGI emphasized the importance of initiating symptom management as early as possible after ICU admission in Japan. Furthermore, the timing, methods, and participants involved in multidisciplinary bedside and family conferences were adjusted to enhance the feasibility of the program for the Japanese healthcare system. The program was structured in a ladder format to ensure timely and appropriate delivery of care to target patients. Additional components were incorporated, including the preparation of a therapeutic environment for patients near EOL and consideration of transfer to a general ward for bereavement care. The validity of the revised program was assessed via a web-based expert survey, to confirm if the content validity for all revised items was I-CVI ≥ 0.78. The intervention program was developed through a scientifically rigorous process in accordance with the 6SQuID framework. This approach enables the adaptation and development of evidence-based intervention programs in countries with different cultural contexts and healthcare systems.
Symptom management in the ICU remains suboptimal. An intervention program designed to facilitate consistent care delivery, independent of the providers’ knowledge or attitudes, may enhance symptom management. Patients in the ICU frequently experience unrelieved distress symptoms [5], which are associated with lower QODD [3]. The conflation of “palliative care” and “EOL care” [14] may contribute to the underutilization of symptom palliation in ICUs. A previous intervention to improve ICU palliative care based on the self-efficacy theory did not significantly improve QODD or pain assessment [15], despite aiming to change intensivists’ knowledge and behavior [16]. In contrast, the present program uses a structured booklet detailing the care content and implementation methods tailored to patients’ conditions. This system-based approach promotes consistent practice regardless of individual self-efficacy or behavioral changes, thus potentially improving ICU symptom management and EOL care quality.
A system that facilitates effective communication between healthcare professionals and family members is essential to improve the quality of palliative and EOL care in the ICU. However, in the Japanese healthcare system, communication through bedside conferences and family meetings may not be adequately implemented without structured interventions. Closed ICU systems, which are common internationally [17], have demonstrated improved interprofessional communication [18] and outcomes [19,20]. In contrast, Japan has a higher prevalence of open ICUs (65.6% versus 17.1% internationally) [21], thus reflecting its ICU admission patterns [22]. Our findings highlight the challenges of conducting timely multidisciplinary meetings involving physicians. To address this issue, a ladder-based program was designed with clear criteria and care content for each stage to facilitate timely interventions and role-sharing, even in open ICU systems. The ladder approach presents staged interventions that are aligned with the patient’s condition and decision-making phase. Thus, it enables the delivery of appropriate care at the right time, even with limited human resources [23]. Expert feedback also prompted a more flexible scheduling of meetings, which was expected to improve feasibility and staff participation.
The care environment during bereavement influences the quality of EOL care This program includes components to improve bereavement settings, such as easing visitation restrictions and enabling transfers to general wards. A previous study on preferred death [24] identified eight key elements, including “dying in a favorite place” and “attending the deathbed,” thus underscoring the importance of setting and family presence. The ICU-QODD also highlighted family presence [25], thus affirming the need to optimize visitation policies. Although home-based EOL care for ICU patients has been reported [26,27], these reports are limited to Japan [28]. Owing to the challenges in discharging critically ill patients and the limitations in the healthcare infrastructure, home care was not included in the standardized program. Given that preferences for home-based care are shaped by patients’ wishes, cultural norms, and systemic constraints, further studies are warranted.
Strengths and limitations
This intervention program was developed using scientifically rigorous methodology and was adapted to the Japanese healthcare system and cultural context. However, this study has some limitations. First, most of the literature on program development originates outside Japan, with limited domestic evidence. The program was modified using expert FGIs to align it with the Japanese context. Second, the patients and their families were not included as stakeholders in the development process. Nevertheless, given that the intervention was designed for the ICU setting, and revisions were based on input from nurses and physicians who play central roles, the program’s feasibility and acceptability may have been enhanced [29]. Future research should assess these aspects through studies involving patients and their families. Finally, the program’s effectiveness was not evaluated. Further implementation studies are required to examine the feasibility, acceptability, and impact of this program.
Conclusion
We developed a nurse-led intervention program to improve palliative care and QODD in ICUs following the 6SQuID framework. The program centers on symptom management and includes three additional core components: multidisciplinary bedside conferences, family conferences, and structured end-of-life care. The content and external validity of the program were established through a literature review and input from an expert panel. Therefore, this program has potential utility in enhancing the quality of palliative and EOL care in Japanese ICUs. Furthermore, by adhering to a scientifically rigorous developmental process, this approach offers a model for adapting evidence-based interventions to diverse cultural and healthcare contexts beyond Japan.
Supporting information
S1 Text. Survey instrument used for content validity indexes evaluation.
https://doi.org/10.1371/journal.pone.0346585.s001
(DOCX)
S2 Text. Item-level content validity indexes ratings.
https://doi.org/10.1371/journal.pone.0346585.s002
(DOCX)
S3 Text. Nurse-led intervention program to improve the palliative care and quality of dying and death in intensive care unit.
https://doi.org/10.1371/journal.pone.0346585.s003
(DOCX)
Acknowledgments
We thank the expert panel members for their support and cooperation in the development of the intervention program. We acknowledge Editage (www.editage.com) for assistance with English language editing.
References
- 1. Tanaka Y, Masukawa K, Sakuramoto H, Kato A, Ishigami Y, Tatsuno J, et al. Development of quality indicators for palliative care in intensive care units and pilot testing them via electronic medical record review. J Intensive Care. 2024;12(1):1. pmid:38195590
- 2. Choi Y, Park M, Kang DH, Lee J, Moon JY, Ahn H. The quality of dying and death for patients in intensive care units: a single center pilot study. Acute Crit Care. 2019;34(3):192–201. pmid:31723928
- 3. Naya K, Sakuramoto H, Aikawa G, Ouchi A, Yoshihara S, Ota Y, et al. Family members’ feedback on the “quality of death” of adult patients who died in intensive care units and the factors affecting the death quality: a systematic review and meta-analysis. Cureus. 2024;16(4):e58344.
- 4. Hinkle LJ, Bosslet GT, Torke AM. Factors associated with family satisfaction with end-of-life care in the ICU: a systematic review. Chest. 2015;147(1):82–93. pmid:25103451
- 5. Puntillo KA, Arai S, Cohen NH, Gropper MA, Neuhaus J, Paul SM, et al. Symptoms experienced by intensive care unit patients at high risk of dying. Crit Care Med. 2010;38(11):2155–60. pmid:20711069
- 6. Edwards JD, Voigt LP, Nelson JE. Ten key points about ICU palliative care. Intensive Care Med. 2017;43(1):83–5. pmid:27506756
- 7. Naya K, Sakuramoto H, Aikawa G, Ouchi A, Oyama Y, Tanaka Y, et al. Intensive care unit interventions to improve quality of dying and death: scoping review. BMJ Support Palliat Care. 2024;spcare-2024-004967. pmid:39089724
- 8. Kinoshita S, Miyashita M. Evaluation of end-of-life cancer care in the ICU: perceptions of the bereaved family in Japan. Am J Hosp Palliat Care. 2013;30(3):225–30. pmid:22584151
- 9. Koyauchi T, Suzuki Y, Sato K, Hozumi H, Karayama M, Furuhashi K, et al. Impact of end-of-life respiratory modalities on quality of dying and death and symptom relief in patients with interstitial lung disease: a multicenter descriptive cross-sectional study. Respir Res. 2022;23(1):79. pmid:35379240
- 10. Wight D, Wimbush E, Jepson R, Doi L. Six steps in quality intervention development (6SQuID). J Epidemiol Commun Health. 2016;70(5):520–5.
- 11. Djelantik AAAMJ, Robinaugh DJ, Boelen PA. The course of symptoms in the first 27 months following bereavement: a latent trajectory analysis of prolonged grief, posttraumatic stress, and depression. Psychiatry Res. 2022;311:114472. pmid:35248806
- 12. Lynn MR. Determination and quantification of content validity. Nurs Res. 1986;35(6):382–5. pmid:3640358
- 13. Gill P, Baillie J. Interviews and focus groups in qualitative research: an update for the digital age. Brit Dent J. 2018.
- 14. Takaoka Y, Hamatani Y, Shibata T, Oishi S, Utsunomiya A, Kawai F, et al. Quality indicators of palliative care for cardiovascular intensive care. J Intensive Care. 2022;10(1):15. pmid:35287745
- 15. Curtis JR, Nielsen EL, Treece PD, Downey L, Dotolo D, Shannon SE, et al. Effect of a quality-improvement intervention on end-of-life care in the intensive care unit: a randomized trial. Am J Respir Crit Care Med. 2011;183(3):348–55. pmid:20833820
- 16. Treece PD, Engelberg RA, Shannon SE, Nielsen EL, Braungardt T, Rubenfeld GD, et al. Integrating palliative and critical care: description of an intervention. Crit Care Med. 2006;34(11 Suppl):S380-7. pmid:17057602
- 17. Sakr Y, Moreira CL, Rhodes A, Ferguson ND, Kleinpell R, Pickkers P, et al. The impact of hospital and ICU organizational factors on outcome in critically ill patients: results from the extended prevalence of infection in intensive care study. Crit Care Med. 2015;43(3):519–26.
- 18. Katz JN, Lishmanov A, van Diepen S, Yu D, Shen H, Pauley E, et al. Length of stay, mortality, cost, and perceptions of care associated with transition from an open to closed staffing model in the cardiac intensive care unit. Crit Pathw Cardiol. 2017;16(2):62–70. pmid:28509706
- 19. Carson SS, Stocking C, Podsadecki T, Christenson J, Pohlman A, MacRae S, et al. Effects of organizational change in the medical intensive care unit of a teaching hospital: a comparison of “open” and “closed” formats. JAMA. 1996;276(4):322–8. pmid:8656546
- 20. Yang Q, Du JL, Shao F. Mortality rate and other clinical features observed in Open vs closed format intensive care units: a systematic review and meta-analysis. Medicine (Baltimore). 2019;98(27):e16261. pmid:31277148
- 21. Yamada S, Sakuramoto H, Aikawa G, Naya K. Survey of guideline compliance and attitude toward symptom management in japanese intensive care units. SAGE Open Nurs. 2023;9:23779608231218155. pmid:38054012
- 22. Sirio CA, Tajimi K, Taenaka N, Ujike Y, Okamoto K, Katsuya H. A cross-cultural comparison of critical care delivery: Japan and the United States. Chest. 2002;121(2):539–48. pmid:11834670
- 23.
World Health Organization. Cancer pain relief: with a guide to opioid availability. 2nd ed. World Health Organization; 1996.
- 24. Kanda K, Takashima N, Tsuji Y, Yokoyama K, Hirao T. Quality of dying and death desired by residents of Kagawa Prefecture, Japan: a qualitative study. Environ Health Prev Med. 2019;24(1):51. pmid:31366323
- 25. Downey L, Curtis JR, Lafferty WE, Herting JR, Engelberg RA. The Quality of Dying and Death Questionnaire (QODD): empirical domains and theoretical perspectives. J Pain Symptom Manage. 2010;39(1):9–22. pmid:19782530
- 26. Hutchinson AL, Van Wissen KA. Home to die from the intensive care unit: a qualitative descriptive study of the family’s experience. Intensive Crit Care Nurs. 2017;43:116–22. pmid:28916415
- 27. Lin Y, Long-Sutehall T, Myall M. The decision-making process of transferring patients home to die from an intensive care unit in mainland China: a qualitative study of family members’ experiences. Intensive Crit Care Nurs. 2023;76:103399. pmid:36731266
- 28. Sato Y, Nakano H, Naraba H, Mochizuki M, Takahashi Y, Sonoo T. A study on changes of home medical intervention including end-of-life care for the elderly in an emergency and critical care center. J Japan Soc Hom Med Emerg Med. 2023;7(1):17–23.
- 29. Skivington K, Matthews L, Simpson SA, Craig P, Baird J, Blazeby JM, et al. A new framework for developing and evaluating complex interventions: update of medical research council guidance. BMJ. 2021;374:n2061. pmid:34593508