Family opinions on resuscitation and participation in end‑of‑life care in the emergency department: A cross‑sectional study

Abstract

OBJECTIVE: The study looked into emergency department family members’ (FMs) views on being present during resuscitation and contributing to end of life care.

METHODS: A cross sectional study with 467 FM volunteers of mildly injured or ill patients was conducted at a research hospital between October 2021 and May 2022. Data were collected using a questionnaire administered by a clinical psychologist. The analysis employed SPSS 22.0 with a significance threshold of P < 0.05. The study was conducted according to the STROBE criteria. Statistical significance was set at P < 0.05.

RESULTS: The mean FMs’ age was 34.3 ± 10.43; 64.2% were male, 62.1% were married, and 76.9% had nuclear families. About 61% wanted the option of being present during resuscitation, with 47.5% desiring participation in both resuscitation and end of life care. Significant differences were observed in opinions based on education, work status, and resuscitation training (P = 0.015, P = 0.001, P = 0.002).

CONCLUSION: Many FMs sought the choice to be present during resuscitation, and nearly half preferred participation in both resuscitation and end of life care.

Introduction

Family presence during resuscitation (FPDR) is when a family member (FM) is present during resuscitation to offer psychosocial support,[1 3] aligning with family centered care theory.[1 4] This theory promotes active involvement of FMs, not just observation.[5] The present FM also supports patient autonomy.[3,4] The American Association of Critical Care Nurses (AACN) notes that FPDR helps with medical decisions and enhances care quality.[6]

Patient and family preferences in nursing, with a focus on FPDR, gained significance around 40 years ago.[7] Doyle et al.’s initial study found that 72% wanted to be present during resuscitation.[7] The Emergency Nurses Association in the US advocated FPDR since 1995.[8] The European Resuscitation Council guidelines in 2015 and 2021 recommend offering FPDR as an option.[9,10] Despite these recommendations, fewer than half of the 32 implemented European countries permit FPDR.[9] The AACN guidelines advise having representative FMs during resuscitation with established procedures. However, published guidelines in critical care units are low in the US (5%), Canada (8%), and Europe (7%).[6]

FPDR is supported by patient and FM preferences and its potential benefits.[3,8,11 14] Studies found that FMs see FPDR as a fundamental right.[3,11] In a systematic review, FMs with FPDR experience found their presence beneficial and desired the option to be present during a loved one’s resuscitation.[3] Patients should be aware that they are not among strangers.[12 14] FMs’ presence within the patient’s view creates a trusting and peaceful environment, benefiting the patient physically, emotionally, and spiritually.[1,12] Reports indicate that patients feel the presence of FMs and relax, even when unconscious.[12,14,15] Evidence shows FPDR benefits FMs, with studies revealing it helps them feel useful, share critical information, and cope with grief in a healthy manner.[3,8,16] Similarly, the FPDR procedure is thought to reduce stress and anxiety in FMs of patients.[1,11] In one study, witnessing resuscitation reduced posttraumatic stress disorder in FMs.[2] Not being present during resuscitation is linked to prolonged pathological grief, increased anxiety, and depression in FMs.[2,6]

Although needed, there is limited literature on FM roles during resuscitation and after death in FPDR procedures. The lack of evidence hampers the development of practical FPDR procedures. To address this, understanding FMs’ perspectives and roles during resuscitation and after death is crucial. This study aimed to investigate FMs’ views on FPDR and end of life care in the emergency department.

Material and Methods

Study design

The research was conducted in a descriptive, cross sectional manner at an education and research hospital located in Van between December 1, 2021, and May 1, 2022.

Research setting

The study was conducted with a focus on the adult emergency department of an educational and research hospital in Van, Turkey. It examined the perspectives of patients with green zone triage codes and their FMs. The hospital’s emergency department typically receives 150– 200 patients per day, and 70%–80% of them are assigned green zone triage codes. These codes are defined by the Turkish Ministry of Health as patients seeking outpatient care, generally in stable health, and experiencing simple health problems caused by nonlife threatening acute symptoms. Surveys were not administered to FMs with yellow and red zone triage codes, as it was believed that families of critically ill patients could be psychologically affected.

Participants

The study included FMs who were over 18 years old, capable of reading and writing in Turkish, had no hearing/communication or mental disabilities, had a blood or marital relationship with the patient, and who volunteered to participate in the study. FMs of critically ill patients and those who wished to withdraw from the study at any stage were excluded.

Variables

The opinions of FMs regarding participation in resuscitation and end of life care in the emergency department constitute the dependent variables in the study, while the sociodemographic characteristics of FMs form the independent variables of the research.

Data sources/measurement

The researcher developed data collection forms based on a literature review.[1,2,8,11,16 19] Content validity was ensured by consulting five experts, including three emergency physicians and two nursing faculty members. The form, consisting of “Introductory Information” and “FMs’ Views on FPDR” reached a content validity index of 0.98 (>0.80 thresholds), confirming its suitability.[20] Data were collected in the hospital’s emergency unit, where volunteering FMs, individually briefed about the research, completed a questionnaire with the assistance of a clinical psychologist.

The researcher developed data collection forms based on a literature review.[1,2,8,11,16 19] Content validity was ensured by consulting five experts, including three emergency physicians and two nursing faculty members. The form, consisting of “Introductory Information” and “FMs’ Views on FPDR” reached a content validity index of 0.98 (>0.80 thresholds), confirming its suitability.[20] In this study, the Cronbach’s alpha value was calculated as 0.817. Data were collected in the hospital’s emergency unit, where volunteering FMs, individually briefed about the research, completed a questionnaire with the assistance of a clinical psychologist.

Sample size

The sample size was determined using G*Power 3.1.9.7 software(Düsseldorf, Germany) based on Cohen’s (d) effect size for the Chi square goodness of fit test.[21] With an effect size of 0.2, α error: 0.05, β error: 0.10, and 90% power, 412 participants were required. To account for data loss, 10% more participants were included.

Initially, 931 eligible FMs were considered. Excluding withdrawals (192 FMs), incomplete forms (230 FMs), and critical relative conditions (38 FMs), the final sample was 467 FMs.

Statistical methods

The SPSS software on Windows (version 22.0; IBM Inc., Canada) was used for data analysis. Descriptive statistics included n (%), mean ± standard deviation for categorical and numerical variables. The Pearson Chi square test compared categorical variables. Significance was P < 0.05. A research report was prepared according to the STROBE criteria.[22]

Ethical considerations

The study covers the adult emergency department of a hospital from December 1, 2021, to May 1, 2022. It includes FMs of patients with the “green zone” code. Ethical approval for this study was obtained from the Hasan Kalyoncu University Non Interventional Research Ethics Committee on November 16, 2021 (Approval Number: 2021/5318). FMs provided confidential verbal and written consent in accordance with international regulations and the Helsinki Declaration. FMs spent 10–15 min on research questions.[23]

Results

The descriptive characteristics of the patients are presented in Table 1.

Table 1. Descriptive characteristics of family members (n=467)

Common reasons for FPDR include: staying informed about relatives (91.4%), being present in final moments (88.7%), feeling safe (85.6%), understanding medical decisions (82.0%), and communicating with health care professionals (81.5%). Additional factors are saying goodbye (78.8%), offering support (77.9%), participating in decisions (66.2%), and ensuring medical care (65.3%). Less common are alignment with preferences/beliefs (55.9%), aiding health care professionals (55.0%), cultural practices (50.0%), and privacy respect (49.1%). Furthermore, 68.5% consider it a fundamental right to be present during a relative’s resuscitation [Table 2].

Table 2. Reasons for family members to want/unwant to be present during resuscitation and reactions of family members when health professionals are considered not doing their jobs well

Major reasons against FPDR are: not witnessing relatives’ distress (84.6%), concerns about health care tasks (82.9%), and preserving positive memories (74.8%). Others include avoiding patient distress (67.9%), infection fears (63.4%), conflicts with health care professionals (58.9%), and causing harm (58.1%). Less common concerns involve task inadequacy, patient privacy (47.2%, 35.4%), and personal health (17.8%) [Table 2].

Perceiving inadequate health care prompts common reactions: seeking explanations (86.5%), verbal reminders (66.4%), legal action (65.3%), and patient transfers (52.7%). Less frequent responses include restricting physical contact (17.1%), trying to assist (12.8%), leaving it to fate (10.3%), and physical intervention (7.5%) [Table 2].

Comparing desired last moments’ location with family type showed significance for large families favoring home (P = 0.012, P < 0.05). Views on family presence during patient resuscitation significantly differed by age, education, work status, and resuscitation training (P = 0.024, P = 0.011, P = 0.000, P = 0.012, respectively, P < 0.05). The desire for presence during relative resuscitation and end of life care varied significantly by education, work status, and resuscitation training (P = 0.015, P = 0.001, P = 0.002, respectively, P < 0.05) [Table 3].

Table 3. Comparison of family members’ opinions about being present during the resuscitation of their relatives with their descriptive characteristics (n=467)

Discussion

The study aimed to understand FMs’ views on their involvement in resuscitation and end of life care at an emergency department. Results revealed mixed opinions, possibly due to the uncommon practice of FPDR in Turkey, indicating low awareness. Niemczyk et al.’s study with 500 patients and 500 FMs showed limited knowledge of FPDR rights, as patients and FMs supported FPDR at 24.2% and 29.2%, respectively.[17] Qualitative research demonstrated stronger FM support for FPDR, aligned with Mortelmans et al.’s 2010 report of 75% of FMs desiring involvement during resuscitation.[18] Twibell et al., in 2015, found that over 90% of FPDR experienced patients favored family presence, with 52% of initially opposed individuals wanting to contribute when their own FMs were involved.[19]

In the study, it was observed that individuals aged 45 and above preferred to be present during their loved one’s resuscitation, possibly due to their higher exposure to the loss of loved ones. Similarly, those with a primary education degree expressed a preference for presence, potentially indicating lower trust in health care professionals or a limited understanding of their explanations. In contrast, individuals who were not employed or homemakers also favored being present, likely because they had more available time to care for their loved ones.

The study shows differing FM views on FPDR availability. Some support it, while others are concerned due to health care professionals’ worries about complexity. FMs’ opinions could change with direct experience. Qualitative research suggests that FMs participating in resuscitation wish to actively assist both relatives and health care professionals.[24] Recent reviews confirm FPDR acceptance as a fundamental right. FM presence during resuscitation benefits both patients and health care pros.[25]

In this study, numerous FMs prefer their relatives’ final moments at home, aiming for support and togetherness. Youngson et al. found that FMs with resuscitated relatives sought info, gave support, and offered comfort.[26] In this study, families had equally important reasons for wanting to be present during relative resuscitation, aligning with literature sources.[19,24] Most notably, the top reason was accessing real time information about the relative’s condition (91.4%).[26]

Witnessing the resuscitation process comforts FMs psychologically.[27] In this study, another key reason for FMs desiring presence during resuscitation is sharing vital medical history and medication details with health care professionals (81.5%). FMs’ input affects interventions. De Stefano et al.’s[24] 2016 study found that FMs shared patient medical history. FMs also find reassurance in observing health care efforts. Twibell et al.’s 2015 study noted FPDR benefits, including updates and comprehensive care.[19] Farewells (78.8%) hold cultural significance. FMs provide support (77.9%), emphasizing their active role. The study underscores FMs actively contributing during critical moments, not just observing.

In this study, 68% of FMs viewed being present during relative resuscitation as a fundamental right, marking a shift toward patient and FM preferences. FMs’ desire to participate (65.3%) reflects the commitment to relatives’ autonomy. Around 55.9% aligned care with preferences, 50.0% followed cultural practices, and 49.1% valued privacy. These practices arise from beliefs, fulfilling obligations for relatives’ final moments. Preserving autonomy and privacy becomes crucial as patients lose consciousness, aligning with cultural and religious emphasis on privacy protection.

Common FM reasons for hesitancy during resuscitation include avoiding distress witnessing (84.6%), fearing professional disruption (82.9%), and preserving positive memories (74.8%). De Stefano et al.’s 2016 study emphasized distress as key.[24] Twibell et al. found FPDR could complicate work,[19] aligning with this study. FM nonparticipation also involves not showing upset (67.9%), fearing infection (63.4%), and noninterference (58.9%). If relatives desire participation (63%), FMs fear disrupting professionals. Concerns about harm (58.1%) contribute to hesitation. Studies highlight limited professional FPDR support.[28,29] Demir reported that 82.6% of professionals found FM presence during resuscitation unsuitable, with 56.3% observing FM disruption and 43.6% considering it traumatic.[28] Kosowan and Jensen identified FPDR barriers, including lack of FM support, procedure misunderstandings, and staff stress concerns.[29]

Health care professionals’ hesitation to support FPDR can stem from FM reactions.[28] The study explores FM responses to perceived inadequate care. Common reactions include questioning professionals (86.5%) and verbal reminders (66.4%). A dedicated professional for FM communication and stress management is vital. FMs taking legal action (65.3%) is a reported risk.[30] Patient transfer (52.7%) risks misunderstanding. Clear communication is crucial. Rare responses include no touching (17.1%), self intervention (12.8%), fate acceptance (10.3%), and physical intervention (7.5%). Despite the low rate (7.5%), it is significant. FPDR has benefits but violence risks. Aljohani et al.’s meta analysis indicated that 52% of health care violence is from FMs.[27] Anti violence measures are essential for FPDR implementation.

Conclusion

This study underscores the significance of patient and family preferences in emergency nursing. Extending FPDR to FMs in emergencies is vital. Despite hospital progress, many prefer patients’ final moments at home for comfort. FMs’ willingness to engage in resuscitation is shaped by patient benefit, emphasizing the importance of their involvement. Improving security and patient FM participation can reduce incidents stemming from perceived inadequate care. Preferences should be assessed beforehand, and FMs informed about resuscitation and FPDR.

Limitations

The study is limited by uncertainty about patients’ health status in the emergency setting, including only FMs of patients in better health (green area). A significant drawback is the omission of FMs with critically ill relatives (yellow and red areas). Awareness of the right to FPDR among FMs is also lacking, presenting a constraint. Nonetheless, surveying FMs in the hospital’s emergency department and the study’s unique contribution to a limited research area enhance its value.

How to cite this article: Akman U, Koyuncu A. Family opinions on resuscitation and participation in end-of-life care in the emergency department: A cross-sectional study. Turk J Emerg Med 2024;24(1):48-54.

Ethical approval for this study was obtained from the Hasan Kalyoncu University, Non-Interventional Research Ethics Board. Ethics Committee on November 16, 2021 (Approval Number: 2021/5318).

Approval received.

• UA: Conceptualization, methodology, investigation, software, resources, data curation, visualization, and writing.
• AK: Conceptualization, methodology, investigation, software, resources, data curation, visualization, writing – review and editing, supervision, and project administration.
• All authors read and approved the final manuscript. We have no conflicts of interest to disclose.

None Declared.

None.

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