NIHR Signal How nurses support families of intensive care patients towards the end of life

Published on 22 November 2016

Families of people dying in intensive care need to receive personalised communication and ongoing support, and be involved in the dying process.

Researchers gathered evidence on how nurses care for patients and their families in intensive care when life-sustaining treatment is withdrawn. The included studies explored the care of the family before, during and after the process. Most of the studies in this small, mixed methods review were qualitative.

Reviewers identified three main ways, or themes, in which families are supported. First, information and good communication, such as the focus on careful use of language, was seen commonly. Second, by careful management of treatment withdrawal itself, for example by clarifying the gradual change expected when medically focussed life-sustaining treatments are withdrawn and family centred end-of-life care begins. Lastly they described a common focus on making the nursing contribution more visible, such as using techniques to build lasting memories for families.

Describing care in this specific setting is a crucial first step to improving palliative care. It may guide training for other healthcare professionals in the quality and consistency of care given on intensive care wards.

The findings support current NICE recommendations for health professionals to deliver care that meets the needs and preferences of the dying person and their family, wherever they are.

Why was this study needed?

The government is committed to providing equal access to high quality end of life care. It aims to enable more people to die at home. People in hospital with life threatening illness may be less likely to receive integrated, timely end of life care.

One in five intensive care patients die on the ward. Medical staff and family often have to take the difficult decision to stop life-sustaining treatment. Public Health England recognises the need to deliver support for loved ones, as well as patients, through this delicate process.

It is important to improve the end of life experience for everyone. The NIHR themed review, Better endings, highlighted the need for a clearer model of specialist palliative care for people who need it, that would address current inequalities and variations in care.

This review gathers evidence on how nurses prepare and support family members of people at the end of life in intensive care.

What did this study do?

This mixed methods review combined the findings of 24 studies with various qualitative and quantitative designs. The majority were qualitative (15/24).

The authors identified papers that explored how staff, mainly nurses, supported and prepared families for the withdrawal of life-sustaining treatment from adults or children on intensive care wards. Authors grouped results together in themes after excluding many that were conducted in other settings or not focussed on end of life.

The review may include some bias. It only included studies published after the year 2000 and available in English. The studies also varied in their design and how they reported their methods. The reviewers used a quality appraisal tool to assess the strength of evidence, but this could not be applied to all identified studies.

What did it find?

The review found three main themes by which intensive care staff, mainly nurses, support families when stopping life support:

  • Theme 1: Equipping families for end of life through information and communication. Twenty two papers discussed the importance of information and communication. Nurses needed to first assess the specific needs of the family to accurately select and subsequently deliver the most helpful information using the appropriate language. This often involved informing families about physical changes that they might see. It also involved helping the family understand that they could have close physical contact with their loved one (for example, talking and stroking their hair) and that this is encouraged.
  • Theme 2: Managing the withdrawal of life-sustaining treatments. Twenty one papers contributed to this theme. Nurses tailored the process of withdrawing treatment to the families needs, for example ensuring a gradual process that might be likened to a natural death. The timing of withdrawing treatment had a significant effect on the satisfaction of the family and it was vital that the family were happy with symptom control.
  • Theme 3: Continuing to care. Over half of the papers reported on preparing the patient, providing emotional support for the family, adapting the environment, nursing presence with the family and creating positive memories. This theme drew attention to the importance of nursing staff continuing to care for the person and their family, for example building memories with them, even though active treatment had stopped.

What does current guidance say on this issue?

NICE guidelines on end of life care emphasise the need to provide the dying person, and their family and friends, with accurate information about their situation and the opportunity to discuss any concerns they have. Information should be provided in a way that responds to their communication needs and preferences. Both the dying person and their families should be offered comprehensive holistic assessments addressing their physical, psychological and spiritual, social and cultural needs and preferences, which may change as care progresses.

What are the implications?

This review details key nursing practices that can help a family cope during the difficult process of withdrawing life-sustaining treatment in intensive care.

Knowing more about how nurses provide support in this situation may help health professionals to develop and implement tools that would ensure consistent delivery of high quality end of life care. An example, developed as part of an NIHR funded study, is the Psychosocial Assessment and Communication Evaluation (PACE) tool, designed to improve communication in intensive care. Such tools may highlight additional training needs, which could have resource implications.

The findings contribute to an increasing evidence base in this area.  It emphasises the role of patient and family-centred care and the importance of sensitive nursing support around and after withdrawing treatment.

Citation and Funding

Coombs M, Parker, Ranse K, et al. An integrative review of how families are prepared for, and supported during withdrawal of life-sustaining treatment in intensive care. J Adv Nurs. 2016. [Epub ahead of print].

Bibliography

Higginson I, Koffman J, Hopkins P, et al. Development and evaluation of the feasibility and effects on staff, patients and families, of a new tool, the Psychosocial Assessment and Communication Evaluation (PACE), to improve communication and palliative care in intensive care and during clinical uncertainty. BMC Medicine. 2013;11:213.

National Palliative and End of Life Care Partnership. Ambitions for palliative and end of life care. A national framework for local action 2015 – 2020. London: National Palliative and End of Life Care Partnership; 2015.

NICE. Care of dying adults in the last days of life. NG31. London: National Institute for Health and Care Excellence; 2015.

NICE. End of life care for adults. QS13. London: National Institute for Health and Care Excellence; 2013.

NICE. Support for commissioners and others using the quality standard for end of life care. London: National Institute for Health and Care Excellence; 2011.

NIHR Dissemination Centre. Better endings. Right care, right place, right time. Southampton: National Institute for Health Research; 2015.

Public Health England. Faith at the end of life: public health approach resource for professionals. London: Public Health England; 2016.

Public Health England. Our commitment to you for end of life care: the Government Response to the Review of Choice in End of Life Care. London: Public Health England; 2016.

Whittemoore R, Knefl K. The integrative review: updated methodology. J Adv Nurs. 2005;52(5):546-53.

Why was this study needed?

The government is committed to providing equal access to high quality end of life care. It aims to enable more people to die at home. People in hospital with life threatening illness may be less likely to receive integrated, timely end of life care.

One in five intensive care patients die on the ward. Medical staff and family often have to take the difficult decision to stop life-sustaining treatment. Public Health England recognises the need to deliver support for loved ones, as well as patients, through this delicate process.

It is important to improve the end of life experience for everyone. The NIHR themed review, Better endings, highlighted the need for a clearer model of specialist palliative care for people who need it, that would address current inequalities and variations in care.

This review gathers evidence on how nurses prepare and support family members of people at the end of life in intensive care.

What did this study do?

This mixed methods review combined the findings of 24 studies with various qualitative and quantitative designs. The majority were qualitative (15/24).

The authors identified papers that explored how staff, mainly nurses, supported and prepared families for the withdrawal of life-sustaining treatment from adults or children on intensive care wards. Authors grouped results together in themes after excluding many that were conducted in other settings or not focussed on end of life.

The review may include some bias. It only included studies published after the year 2000 and available in English. The studies also varied in their design and how they reported their methods. The reviewers used a quality appraisal tool to assess the strength of evidence, but this could not be applied to all identified studies.

What did it find?

The review found three main themes by which intensive care staff, mainly nurses, support families when stopping life support:

  • Theme 1: Equipping families for end of life through information and communication. Twenty two papers discussed the importance of information and communication. Nurses needed to first assess the specific needs of the family to accurately select and subsequently deliver the most helpful information using the appropriate language. This often involved informing families about physical changes that they might see. It also involved helping the family understand that they could have close physical contact with their loved one (for example, talking and stroking their hair) and that this is encouraged.
  • Theme 2: Managing the withdrawal of life-sustaining treatments. Twenty one papers contributed to this theme. Nurses tailored the process of withdrawing treatment to the families needs, for example ensuring a gradual process that might be likened to a natural death. The timing of withdrawing treatment had a significant effect on the satisfaction of the family and it was vital that the family were happy with symptom control.
  • Theme 3: Continuing to care. Over half of the papers reported on preparing the patient, providing emotional support for the family, adapting the environment, nursing presence with the family and creating positive memories. This theme drew attention to the importance of nursing staff continuing to care for the person and their family, for example building memories with them, even though active treatment had stopped.

What does current guidance say on this issue?

NICE guidelines on end of life care emphasise the need to provide the dying person, and their family and friends, with accurate information about their situation and the opportunity to discuss any concerns they have. Information should be provided in a way that responds to their communication needs and preferences. Both the dying person and their families should be offered comprehensive holistic assessments addressing their physical, psychological and spiritual, social and cultural needs and preferences, which may change as care progresses.

What are the implications?

This review details key nursing practices that can help a family cope during the difficult process of withdrawing life-sustaining treatment in intensive care.

Knowing more about how nurses provide support in this situation may help health professionals to develop and implement tools that would ensure consistent delivery of high quality end of life care. An example, developed as part of an NIHR funded study, is the Psychosocial Assessment and Communication Evaluation (PACE) tool, designed to improve communication in intensive care. Such tools may highlight additional training needs, which could have resource implications.

The findings contribute to an increasing evidence base in this area.  It emphasises the role of patient and family-centred care and the importance of sensitive nursing support around and after withdrawing treatment.

Citation and Funding

Coombs M, Parker, Ranse K, et al. An integrative review of how families are prepared for, and supported during withdrawal of life-sustaining treatment in intensive care. J Adv Nurs. 2016. [Epub ahead of print].

Bibliography

Higginson I, Koffman J, Hopkins P, et al. Development and evaluation of the feasibility and effects on staff, patients and families, of a new tool, the Psychosocial Assessment and Communication Evaluation (PACE), to improve communication and palliative care in intensive care and during clinical uncertainty. BMC Medicine. 2013;11:213.

National Palliative and End of Life Care Partnership. Ambitions for palliative and end of life care. A national framework for local action 2015 – 2020. London: National Palliative and End of Life Care Partnership; 2015.

NICE. Care of dying adults in the last days of life. NG31. London: National Institute for Health and Care Excellence; 2015.

NICE. End of life care for adults. QS13. London: National Institute for Health and Care Excellence; 2013.

NICE. Support for commissioners and others using the quality standard for end of life care. London: National Institute for Health and Care Excellence; 2011.

NIHR Dissemination Centre. Better endings. Right care, right place, right time. Southampton: National Institute for Health Research; 2015.

Public Health England. Faith at the end of life: public health approach resource for professionals. London: Public Health England; 2016.

Public Health England. Our commitment to you for end of life care: the Government Response to the Review of Choice in End of Life Care. London: Public Health England; 2016.

Whittemoore R, Knefl K. The integrative review: updated methodology. J Adv Nurs. 2005;52(5):546-53.

An integrative review of how families are prepared for, and supported during withdrawal of life-sustaining treatment in intensive care

Published on 11 August 2016

Coombs, M. A.,Parker, R.,Ranse, K.,Endacott, R.,Bloomer, M. J.

J Adv Nurs , 2016

AIM: To conduct an integrative review on how nurses prepare families for and support families during withdrawal of life-sustaining treatments in intensive care. BACKGROUND: End-of-life care is widely acknowledged as integral to the practice of intensive care. However, little is known about what happens after the decision to withdraw life-sustaining treatments has been made and how families are prepared for death and the dying process. DESIGN: Integrative literature review. DATA SOURCES: MEDLINE, CINAHL Plus, PsychINFO, PUBMED, Scopus, EMBASE and Web of Knowledge were searched for papers published between 2000 - May 2015. REVIEW METHODS: A five stage review process, informed by Whittemore and Knafl's methodology was conducted. All papers were reviewed and quality assessment performed. Data were extracted, organised and analysed. Convergent qualitative thematic synthesis was used. RESULTS: From an identified 479 papers, 24 papers were included in this review with a range of research approaches: qualitative (n=15); quantitative (n=4); mixed methods (n=2); case study (n=2); and discourse analysis (n=1). Thematic analysis revealed the nurses: equipped families for end of life through information provision and communication; managed the withdrawal of life-sustaining treatments to meet family need; and continued care to build memories. CONCLUSION: Greater understanding is needed of the language that can be used with families to describe death and dying in intensive care. Clearer conceptualisation of the relationship between the medically focussed withdrawal of life-sustaining treatments and patient/family centred end-of-life care is required making the nursing contribution at this time more visible. This article is protected by copyright. All rights reserved.

The Psychosocial Assessment and Communication Evaluation (PACE) tool was developed in 2013 to improve communication and palliative care in intensive care settings. It was developed as a new intervention following a literature review, qualitative interviews and focus groups. The tool was modelled in two intensive care units with over 1900 admissions a year. The second phase of the study evaluated the feasibility of the tool and found that it had the potential to improve communication, information, consistency and family perceptions of symptom control. The tool needs validation before it is more widely implemented.

Expert commentary

I’m wary when a review identifies nearly 500 articles but only 25 make it to the final paper. However, the common themes around withdrawing care on an intensive therapy unit not being synonymous with the end of life, resonate. The variety of language used is potentially problematic and combined with the technological aspects can lead to confusion for both professionals, patients and families as to the likely outcome – namely death. This review highlights the nursing role in providing ongoing care, symptom management and emotional support. The specific aspects in ITU relate to creating a less technological environment with a continued nursing presence regardless. The importance of getting this right is essential for good end of life care and the on-going bereavement.

Dr Ollie Minton, Macmillan Consultant in Palliative Medicine & Honorary Senior Lecturer, St George's University Hospitals NHS Foundation Trust

Tools

Categories

  •   Critical care, Palliative and End of Life Care, Nursing, Acute and general medicine