Family centred care before and during life-sustaining treatment withdrawal in intensive care: A survey of information provided to families by Australasian critical care nurses

doi:10.1016/j.aucc.2016.08.006

Australian Critical Care

Volume 29, Issue 4, November 2016, Pages 210-216

https://doi.org/10.1016/j.aucc.2016.08.006 Get rights and content

Abstract

Background

A core component of family-centred nursing care during the provision of end-of-life care in intensive care settings is information sharing with families. Yet little is known about information provided in these circumstances.

Objective

To identify information most frequently given by critical care nurses to families in preparation for and during withdrawal of life-sustaining treatment.

Design

An online cross-sectional survey.

Methods

During May 2015, critical care nurses in Australia and New Zealand were invited to complete the Preparing Families for Treatment Withdrawal questionnaire. Data analysis included descriptive statistics to identify areas of information most and least frequently shared with families. Cross tabulations with demographic data were used to explore any associations in the data.

Results

From the responses of 159 critical care nurses, information related to the emotional care and support of the family was most frequently provided to families in preparation for and during withdrawal of life-sustaining treatment. Variation was noted in the frequency of provision of information across body systems and their associated physical changes during the dying process. Significant associations (p < 0.05) were identified between the variables gender, nursing experience and critical care experiences and some of the information items most and least frequently provided.

Conclusions

The provision of information during end-of-life care reflects a family-centred care approach by critical care nurses with information pertaining to emotional care and support of the family paramount. The findings of this study provide a useful framework for the development of interventions to improve practice and support nurses in communicating with families at this time.

Introduction

The majority of patient deaths in intensive care occur following a decision to withhold or withdraw life-sustaining treatment.1, 2 With 86% of patient deaths in intensive care expected, the provision of end-of-life care can be planned and facilitated in these circumstances.² Family-centred care is a model of care where the family can contribute to and participate in the planning and delivery of care in partnership with health care providers.³ Family-centred care should be at the core of critical care nurses’ practice during the provision of end-of-life care,4, 5 with research indicating nursing practice consistent with this approach.6, 7 The proximity and constancy of the critical care nurse at the bedside, resultant from the high nurse-patient ratios, places critical care nurses in a unique position to facilitate positive patient- and family-centred end-of-life care experiences.8, 9

An important component of family-centred care is the provision of information to and communication with the family. Key to the provision of a quality end-of-life care experience, and indeed to improving outcomes for bereaved family members is helping families understand events occurring prior to, and during withdrawal of life-sustaining treatment.10, 11 Previous research has identified that provision of information to families is a core and frequently undertaken component of nursing work during end-of-life care.⁸ The actual content of messages imparted by critical care nurses to families at this time has received limited attention except through acknowledgement of the role of critical care nurses in answering questions posed by families and explaining what was happening to the patient.7, 12, 13

One study that has undertaken a more detailed and nuanced exploration of the type of information nurses give to families at this time was undertaken by researchers in the United States and focused on preparing families for death of their relative following withdrawal of mechanical ventilation.¹⁴ Content analysis of the responses of 31 critical care nurses identified 43 descriptors of different types of information conveyed to families. The majority of descriptors (67.5%, n = 29) were related to physical sensations and symptoms although study authors acknowledged that the format of the questionnaire may have contributed to this finding due to prompts specifically provided for the physical domain.¹⁴

Given the opportunity for nurses to positively impact end-of-life care practice and the importance of a family centred care approach for critically ill patients and their families at this time, further research is needed to identify the content of information communicated by critical care nurses to families prior to and during withdrawal of life-sustaining treatment. This research can inform the development of educational content and interventions to be implemented in practice to assist critical care nurses sharing information with families.

Section snippets

Study aim

To identify information most frequently given by critical care nurses to families in preparation for and during withdrawal of life sustaining treatment.

Design

An online cross-sectional survey was used in this study.

Preparing families for treatment withdrawal questionnaire

The survey instrument used in this study was developed from previous research undertaken by Kirchhoff, Conradt and Anumandla.¹⁴ Kirchhoff et al. originally designed the questionnaire to explore the content of messages given to families by critical care nurses in preparation for withdrawal

Respondent profile

159 completed survey responses were received, with 62.9% of respondents from Australia (n = 100, response rate 10.5%) and 36.5% of respondents from New Zealand (n = 59, response rate 28%). The mean age of respondents was 43.6 years (SD 10.2) and 88.4% were female. Respondents were experienced nurses with 93.7% having more than five years nursing experience and 84.8% having more than 5 years’ experience in a critical care setting. In addition, 98.7% had completed postgraduate qualifications in

Discussion

The provision of quality care at end-of-life in intensive care settings is the current focus of research efforts internationally.¹⁷ Information provided to families before and during life-sustaining treatment withdrawal in intensive care by critical care nurses is integral to family-centred care at this time. The results of this study highlight that areas of information focusing on emotional care and support of the patient and family are a priority for nurses whilst less emphasis is placed on

Conclusion

Family-centred care is key to the delivery of quality care at end-of-life. A core component of family-centred care is the provision of information to and communication with the family. Critical care nurses most frequently provide information directed at the emotional care and support of the family. The findings of this study indicate variation in the frequency that physical symptoms attributed to different body systems are shared with families. Physical changes in the neurological,

Conflict of interest statement

No conflict of interest.

Funding statement

Partial funding to support this project was obtained from an ACCCN Experienced Researcher Grant 2014.

Author's contributions

Study conception and design: All authors.

Acquisition of data: KR, MB.

Analysis and interpretation of data: KR, RE.

Drafting the article or revising it critically for important intellectual content: All authors.

Final approval of the version submitted: All authors.

Acknowledgements

Thanks are extended to the critical care nurses that participated in this study by providing expert review of the survey at the pilot stage or completing the online survey.

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Dying in intensive care: An analysis of the perspectives of families and clinicians on end-of-life care
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Despite a growing body of research into end-of-life care (EOLC) in intensive care units (ICUs), few studies have concurrently explored the perspectives of families and clinicians.
The objective of this study was to identify the characteristics of high-quality EOLC in the ICU from family and clinician perspectives and by examining the care documented in medical records.
A convergent mixed-methods study incorporating electronic health record audits (n = 20), structured interview surveys with families (n = 20), clinician surveys (n = 189), and focus groups (n = 10) was undertaken at a 30-bed, level 3 ICU at a metropolitan public adult teaching hospital in Australia. Descriptive statistics were calculated from quantitative data, and inductive thematic analysis was used to analyse qualitative data.
Overall, families were very satisfied with EOLC and the quality of communication yet, felt that earlier, clearer communication that the patient was dying was required. Families spoke of the attentiveness, or lack thereof, by ICU clinicians and the opportunity to be present for the patient's death. The majority of ICU clinicians felt EOLC could be improved. Nurses highlighted communication challenges when family meetings were delayed. Some nurses expressed a lack of clarity of how to withdraw care, resulting in hesitancy to cease potentially inappropriate care, and to provide EOLC outside ICU practice norms. In many instances, observations, invasive monitoring, and interventions were documented after EOLC commenced. A lack of documented personal cares was also noted.
This study provides new insights into EOLC from the dual perspectives of families and clinicians. There is a need for institutional guidelines to support ICU clinicians’ EOLC practices and education to improve clinician confidence with communication.
Family-centred care at end of life in critical care: A retrospective descriptive study
2022, Collegian
Citation Excerpt :
The benefits of a family-centred approach to care in critical care settings are well recognised (Pretorius, Heyns, Filmalter, & Botma, 2021). Supporting next-of-kin and family to contribute to care planning and decision-making (Ranse, Bloomer, Coombs, & Endacott, 2016), and encouraging family members to participate in the patient's experience by spending time at the patient's bedside (Wetzig & Mitchell, 2017) can aid coping and may improve their healthcare experience (Goldfarb, Bibas, Bartlett, Jones, & Khan, 2017). Numerous previous studies have highlighted that receiving information is a priority for families when a patient is admitted to hospital (Bloomer, Endacott, Ranse, & Coombs, 2017; Virdun, Luckett, Davidson, & Phillips, 2015; Wetzig & Mitchell, 2017), as is speaking with members of the patient's treating team (Bloomer, Lee, & O'Connor, 2010a; Virdun et al., 2015; Wetzig & Mitchell, 2017), to ask questions, to advocate for the critically ill person, and to ensure care is consistent with the person's culture, values and wishes (Brooks, Bloomer, & Manias, 2019).
A family-centred approach to care can aid family coping at the end of life in critical care. Yet little is known about how families’ preferences for involvement in care planning and decision-making, are assessed and supported.
To explore how family involvement and assessment of their needs at the end of life are facilitated and supported in critical care
A descriptive study utilising a retrospective audit of the medical records of 50 patients who received end-of-life care in one critical care unit.
Next-of-kin were documented in 96% of records, with the spouse/partner fulfilling the role in 46% of cases. A Goals of Care Summary was completed in 74.0% of cases with 62.2% of patients for treatment limitation, 10.8% for supportive/palliative care, and 21.6% identified as terminal. In 75.7% of cases there was evidence of next-of-kin/family consultation and formal family meetings were held in 90.0% of cases. There was also evidence of supporting family involvement and needs before and after death. 22.0% received bereavement support and in 34.0% cultural/religious practices were facilitated after patient death.
Clinicians rely on family members to inform care planning and decision-making. Hence, a family-centred approach to care is essential in critical care practice.
Opportunities for next-of-kin or extended family to be involved in patient care planning and decision making are key to ensuring family members to be as involved as they wish, kept informed and receive bereavement support. Addressing patients’ and families' cultural/religious needs and other needs that extend beyond the clinical setting are essential to a family-centred approach to care at the end of life.
A national Position Statement on adult end-of-life care in critical care
2022, Australian Critical Care
Citation Excerpt :
Bedside communication with family provides time for them to ask questions, seek clarification, and understand what is going on and what to expect.45 In this way, communication may focus not only on explaining physiological changes in the patient but also on addressing family's information needs, demonstrating support for families.65 With recognition that there is an ‘art’ to effective communication at the end of life, navigating family communication is a complex and multifaceted nursing activity.5
Patient death in critical care is not uncommon. Rather, the provision of end-of-life care is a core feature of critical care nursing, yet not all nurses feel adequately prepared for their role in the provision of end-of-life care. For this reason, the Australian College of Critical Care Nurses (ACCCN) supported the development of a Position Statement to provide nurses with clear practice recommendations to guide the provision of end-of-life care, which reflect the most relevant evidence and information associated with end-of-life care for adult patients in Australian critical care settings. A systematic literature search was conducted between June and July, 2020 in CINAHL Complete, Medline, and EMBASE databases to locate research evidence related to key elements of end-of-life care in critical care. Preference was given to the most recent Australian or Australasian research evidence, where available. Once the practice recommendations were drafted in accordance with the research evidence, a clinical expert review panel was established. The panel comprised clinically active ACCCN members with at least 12 months of clinical experience. The clinical expert review panel participated in an eDelphi process to provide face validity for practice recommendations and a subsequent online meeting to suggest additional refinements and ensure the final practice recommendations were meaningful and practical for critical care nursing practice in Australia. ACCCN Board members also provided independent review of the Position Statement. This Position Statement is intended to provide practical guidance to critical care nurses in the provision of adult end-of-life care in Australian critical care settings.
Australian College of Critical Care Nurses and Australasian College for Infection Prevention and Control position statement on facilitating next-of-kin presence for patients dying from coronavirus disease 2019 (COVID-19) in the intensive care unit
2021, Australian Critical Care
The coronavirus disease 2019 (COVID-19) pandemic is challenging healthcare systems worldwide, none more so than critical and intensive care settings. Significant attention has been paid to the capacity of Australian intensive care unit (ICUs) to respond to a COVID-19 surge, particularly in relation to beds, ventilators, staffing, personal protective equipment, and unparalleled increase in deaths in ICUs associated with COVID-19 seen internationally. While death is not uncommon in critical care, the international experience demonstrates that restrictions to family presence at the end of life result in significant distress for families and clinicians. As a result, the Australian College of Critical Care Nurses and the Australasian College for Infection Prevention and Control supported the development of a position statement to provide critical care nurses with specific guidance and recommendations for practice for this emerging priority area. Where possible, position statements are founded on high-quality evidence. However, the short time period since the first recognition of a cluster of pneumonia-like cases in China in January, 2020, meant that an integrative approach was required to expedite timely development of this position statement in preparation for a COVID-19 surge in Australia. This position statement is intended to provide practical guidance to critical care nurses in facilitating next-of-kin presence for patients dying from COVID-19 in the ICU.
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2020, Enfermeria Intensiva
El cuidado en la unidad de cuidados intensivos implica contemplar, entre otras dimensiones del paciente, a la familia. Para esto es necesario que la enfermera establezca relaciones con los familiares del paciente.
Identificar la forma en que se establece la relación enfermera-familia en la UCI de adultos, al igual que las condiciones, elementos y factores que la favorecen o la dificultan.
Revisión narrativa integrativa de la literatura científica. Las bases de datos consultadas fueron: Ovid, PubMed, Science Direct, Scopus, Clinical Key, Google Académico y Scielo. Se buscaron artículos en inglés y español publicados entre el 2014 y el 2018. Los descriptores y fórmulas utilizadas se seleccionaron de acuerdo con el acrónimo Population and their problems, Exposure and Outcomes or themes (PEO). La población correspondió a las enfermeras de UCI y los familiares de pacientes en estado crítico; la exposición o contexto, a la unidad de cuidados intensivos adultos y los resultados esperados, a la forma como estos se relacionan. Para la evaluación metodológica se utilizaron la guía STROBE para artículos observacionales, PRISMA para artículos de revisión, COREQ para artículos cualitativos y CASPe para artículos derivados de proyectos.
Se identificaron 214 artículos, de los cuales se seleccionaron 63 para incluir en la revisión. Las temáticas centrales identificadas fueron: el entorno de la UCI y sus efectos sobre el familiar, la empatía como indicador de la relación, la interacción como medio para relacionarse, la comunicación como centro de las relaciones y las barreras para el establecimiento de relaciones.
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Research paperFamily centred care before and during life-sustaining treatment withdrawal in intensive care: A survey of information provided to families by Australasian critical care nurses

Abstract

Background

Objective

Design

Methods

Results

Conclusions

Introduction

Section snippets

Study aim

Design

Preparing families for treatment withdrawal questionnaire

Respondent profile

Discussion

Conclusion

Conflict of interest statement

Funding statement

Author's contributions

Acknowledgements

Aust Crit Care

Intensive Crit Care Nurs

Aust Crit Care

Intensive Crit Care Nurs

Aust Crit Care

Int J Nurs Stud

Appl Nurs Res

Intensive Crit Care Nurs

Intensive Crit Care Nurs

Intensive Crit Care Nurs

Aust Crit Care

Withholding or withdrawal of treatment under French rules: a study performed in 43 intensive care units

Ann Intensive Care

Research paper
Family centred care before and during life-sustaining treatment withdrawal in intensive care: A survey of information provided to families by Australasian critical care nurses