Elsevier

Australian Critical Care

Volume 26, Issue 1, February 2013, Pages 23-28
Australian Critical Care

Nursing care of the family before and after a death in the ICU—An exploratory pilot study

https://doi.org/10.1016/j.aucc.2012.01.001Get rights and content

Abstract

This qualitative descriptive study was undertaken in two metropolitan ICUs utilising focus groups to describe the ways in which ICU nurses care for the families of dying patients during and after the death. Participants shared their perspectives on how they care for families, their concerns about care, and detailed the strategies they use to provide timely and person-centred family care. Participants identified that their ICU training was inadequate in equipping them to address the complex care needs of families leading up to and following patient deaths, and they relied on peer mentoring and role-modelling to improve their care. Organisational constraints, practices and pressures impacting on the nurse made ‘ideal’ family care difficult. They also identified that a lack of access to pastoral care and social work after hours contributed to their concerns about family care. Participants reported that they valued the time nurses spent with families, and the importance of ensuring families spent time with the patient, before and after death.

Introduction

Intensive Care Units (ICUs) are places where the critically ill receive technologically sophisticated care,1 and where the primary goal of therapy is to help patients recover from acute threats to their health.2 Despite societal expectations which also focus on this goal,3 the mortality rate amongst patients in the ICU is higher than most other health care settings,4 and death is inevitable for many ICU patients, with as many as one in five patients dying within the ICU.5

Many studies have reported on the practice and clinical management of end of life (EOL) care in the ICU,2, 3, 6, 7 the involvement/inclusion of family members in end of life discussions and decision making processes.8, 9, 10 The challenge of caring for a dying patient and their families receives less research attention.

The ICU environment differs from many other hospital environments, and this creates many challenges in ensuring that the dying patient and their family receive optimal care.11, 12 The bedside nurse is a constant presence, spending more time at the bedside than any other professional,1 performing a role that is more clearly associated with ‘caring’ than ‘curing’.13 As a result nurses working in the ICU are frequently exposed to death and dying, either as a result of sudden and unexpected death,4 or a decision to withdraw care in cases of treatment futility.3

In a specialist palliative care setting, attending to a grieving family's follow-up care needs is an important aspect of nursing care after death.14, 15 A multidisciplinary team, inclusive of spiritual support staff, bereavement coordinators and volunteers, support nursing staff and help facilitate this important aspect of care.16 However ICUs may not have access to the same level of specialist support for their dying patients and their families. Bloomer et al.3 conducted an audit of all deaths in an Australian ICU and found that a referral to specialist palliative care services was made in only 4% of cases, and to social work in only 4% of cases, despite 65% of deaths occurring during normal business hours.

Where appropriate support service personnel are not available, such as after hours and weekends, the ICU nurse, who is already in an existing caring relationship with the patient and family, is left with multiple responsibilities. The nurse is responsible for not only preparing and showing respect to the corpse, supporting the family emotionally with the realisation that death had occurred,12 but also practically responding to their need for information about what to do next.17

This aspect of the nursing role can be a source of considerable stress and internal conflict18 for the ICU nurse, and as Holland and Neimeyer19 explain, excessive encounters with death and dying can lead to a sense of failure in treatment, death anxiety, feelings of incompetence and a discomfort in facing intense emotions. In two recent Australian studies undertaken in the acute care environment, the need for further continuing education in care of the dying was deemed necessary for nurses to adequately perform this role.20, 21 What is not entirely clear in the existing literature is what the nurses themselves see their role entails after a death in the ICU, and whether the nurses consider themselves adequately emotionally and educationally prepared for this role.

Section snippets

Aims

The aims of this pilot study were to describe the way nurses working in ICU care for family members through the patient's dying phase and after death; to explore the nurses’ perspectives on their preparedness and ability to provide this care for the family; and to identify organisational processes and environmental factors that may exist in the ICU, that either facilitate or limit this nursing care.

Method

A qualitative approach was used for this exploratory descriptive study, which utilised focus groups to gather the data.

Ethical considerations

Ethical approval was gained from the Human Research and Ethics Committee of the Health Service, followed by approval from Monash University.

Setting

This project was undertaken in two ICUs from two hospitals in metropolitan Melbourne, Victoria, Australia. The investigators chose to use more than one site for this research to ensure the findings were evident in more than one ICU. The two ICUs chosen are within a short geographical distance from each other, and both serve similar multicultural populations. Demographics of both ICUs, as reported by the Nurse Unit Managers, are detailed in Table 1. As the table demonstrates, they have similar

Participants

Participants were recruited through initial contact with the Nurse Unit Managers, followed by the dissemination of study information and flyers about the ICUs. Registered Nurses with more than 12 months of work experience in the ICU and with previous experience in caring for a patient who died in the ICU, were invited to express their interest in participating in the study. The Principal Investigator negotiated a convenient time and location for the focus group, and staff were released from

Data collection procedure

Two focus groups were held with staff from each site. Using open-ended questions and guiding concepts, the aim of the focus group is to encourage participants to engage in dialogue with the Principal Investigator, and each other (Schneider, Whitehead, Elliott, Lobiondo-Wood and Haber, 2007) about the role of nurses in caring for bereaved family members in the ICU setting, and the nurse's ability and/or preparedness for this role. All participants were encouraged to contribute to the discussion

Data analysis

All focus groups were digitally recorded and transcribed verbatim. Each investigator independently analysed the narrative data using inductive content analysis, which involves each investigator reading and re-reading the transcripts, making coding and theme notes on the side of the transcript.22 Using this inductive method, ensures that the themes and any sub-themes are derived inductively from the raw data,22, 23 rather than trying to get the data to fit pre-determined themes.22 Once each

Results

The focus groups took between 42 and 50 min to complete, with up to 6 people in each focus group. What was common to all focus group discussions was an over-arching, driving desire to facilitate a ‘good death’ for patients, which the nurses described as

A really dignified one … where the person is clean … they’re not in a mess” (FG4), and “… you try and treat [their symptoms] as well as you can for the family's sake, so that to the family they can see they’re going in a way that is a way they

Presence

Nurses identified that communicating with families and working with families were essential when a death occurs.

Discussion

The focus of participants in care of the family to ensure their experience of “good death” was not surprising. The participants demonstrated a dedication to patient care, extending to families, even when organisational, environmental and cultural impedances exist, creating ‘less than ideal’ circumstances in which to provide care for a dying person. The nurses described a strong commitment to care for the living and the dying, developing their own strategies and mechanisms to facilitate a ‘good

Limitations of the study

The findings of this pilot study are pertinent to the individuals who participated in the study, and to the Intensive Care Units at which the participants worked. They provide a snapshot perspective of the participants at the time the focus groups were conducted. This said, it is possible that other nursing staff working in the two ICUs involved in the study, and more broadly in other ICUs may find some similarities with the results reported here and themselves.

The participants who took part in

Conclusion and recommendations

From this research it is evident that nurses working in ICU undertake what can be a very challenging and emotionally taxing role in providing care to patients who die and routinely extend that care to their family. Organisational pressures and constraints which fail to acknowledge the nursing work that occurs after death, result in a situation that forces nurses to be task-oriented rather than person-centred in their care delivery.

The participants highlighted the tension they experienced

Acknowledgements

This research was possible thanks to the support of the ICUs who participated in this study, both of which are located in Melbourne, Australia. In particular, we thank the Nurse Unit Managers who helped to facilitate staff availability for participation and to the nursing staff who participated.

Thanks also go to the Intensive Care Foundation for their financial support of this research project in the form of a Major Research Grant.

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