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Position statement| Volume 35, ISSUE 4, P480-487, July 2022

A national Position Statement on adult end-of-life care in critical care

  • Melissa J. Bloomer
    Correspondence
    Corresponding author at: Deakin University, 221 Burwood Highway, Burwood, VIC, 3125, Australia.
    Affiliations
    School of Nursing and Midwifery, Deakin University, 1 Gheringhap Street, Geelong, Victoria, 3220, Australia

    Centre for Quality and Patient Safety Research, Deakin University, 1 Gheringhap Street, Geelong, Victoria, 3220, Australia

    Institute for Health Transformation, Deakin University, 1 Gheringhap Street, Geelong, VIC, 3220, Australia

    Research Advisory Panel, Australian College of Critical Care Nurses, Surrey Hills, VIC, 3127, Australia

    End of Life Advisory Panel, Australian College of Critical Care Nurses, Surrey Hills, VIC, 3127, Australia
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  • Kristen Ranse
    Affiliations
    Research Advisory Panel, Australian College of Critical Care Nurses, Surrey Hills, VIC, 3127, Australia

    End of Life Advisory Panel, Australian College of Critical Care Nurses, Surrey Hills, VIC, 3127, Australia

    School of Nursing and Midwifery, Griffith University, Queensland, Australia

    Menzies Health Institute Queensland, Griffith University, Queensland, Australia
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  • Ashleigh Butler
    Affiliations
    Austin Health Clinical School, School of Nursing and Midwifery, La Trobe University, Victoria, Australia

    The Louis Dundas Centre for Children's Palliative Care, UCL Great Ormond Street Institute for Child Health, London, United Kingdom
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  • Laura Brooks
    Affiliations
    School of Nursing and Midwifery, Deakin University, 1 Gheringhap Street, Geelong, Victoria, 3220, Australia

    Centre for Quality and Patient Safety Research, Deakin University, 1 Gheringhap Street, Geelong, Victoria, 3220, Australia

    Institute for Health Transformation, Deakin University, 1 Gheringhap Street, Geelong, VIC, 3220, Australia

    End of Life Advisory Panel, Australian College of Critical Care Nurses, Surrey Hills, VIC, 3127, Australia
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Open AccessPublished:August 09, 2021DOI:https://doi.org/10.1016/j.aucc.2021.06.006

      Abstract

      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.

      Keywords

      1. Introduction

      Death in critical care is not uncommon.
      • Sadler E.
      • Hales B.
      • Henry B.
      • Xiong W.
      • Myers J.
      • Wynnychuk L.
      • et al.
      Factors affecting family satisfaction with inpatient end-of-life care.
      The provision of end-of-life care is a core feature of critical care nursing.
      • Coombs M.
      • Fulbrook P.
      • Donovan S.
      • Tester R.
      • deVries K.
      Certainty and uncertainty about end of life care nursing practices in New Zealand Intensive Care Units: a mixed methods study.
      The purpose of this Position Statement is to provide critical care nurses with specific practice recommendations to support the facilitation of high-quality end-of-life care.
      Having an educated and skilled nursing workforce is essential to providing high-quality end-of-life care.
      Australian Commission on Safety and Quality in Health Care
      National consensus statement: essential elements for safe and high quality end-of-life care.
      Given not all nurses are adequately prepared for their role in providing end-of-life care,
      • Anderson W.G.
      • Puntillo K.
      • Boyle D.
      • Barbour S.
      • Turner K.
      • Cimino J.
      • et al.
      ICU bedside nurses' involvement in palliative care communication: a multicenter survey.
      ,
      • Bloomer M.
      • Endacott R.
      • Ranse K.
      • Coombs M.
      Navigating communication with families during withdrawal of life-sustaining treatment in intensive care: a qualitative descriptive study in Australia and New Zealand.
      clear practice recommendations are essential to guiding care. However, recommendations for practice must also be supported by ongoing targeted education programs for nurses, which relate to end-of-life care of the patient and the family.
      • Ranse K.
      • Yates P.
      • Coyer F.
      Modelling end-of-life care practices: factors associated with critical care nurse engagement in care provision.
      Education priorities include processes for withdrawing life-sustaining treatments;
      • Coombs M.
      • Mitchell M.
      • James S.
      • Wetzig K.
      Intensive care bereavement practices across New Zealand and Australian intensive care units: a qualitative content analysis.
      ,
      • Coombs M.
      • Parker R.
      • Ranse K.
      • Endacott R.
      • Bloomer M.
      An integrative review of how families are prepared for, and supported during withdrawal of life-sustaining treatment in intensive care.
      the use of supplemental oxygen, hydration and nutrition support, limb exercises, and pharmacological management;
      • Coombs M.
      • Fulbrook P.
      • Donovan S.
      • Tester R.
      • deVries K.
      Certainty and uncertainty about end of life care nursing practices in New Zealand Intensive Care Units: a mixed methods study.
      organ donation criteria and processes and supports for donor families;
      • West R.
      • Burr G.
      Why families deny consent to organ donation.
      culturally sensitive communication and care;
      • Anderson W.G.
      • Puntillo K.
      • Boyle D.
      • Barbour S.
      • Turner K.
      • Cimino J.
      • et al.
      ICU bedside nurses' involvement in palliative care communication: a multicenter survey.
      ,
      • Bloomer M.
      • Endacott R.
      • Ranse K.
      • Coombs M.
      Navigating communication with families during withdrawal of life-sustaining treatment in intensive care: a qualitative descriptive study in Australia and New Zealand.
      ,
      • Brooks L.A.
      • Bloomer M.J.
      • Manias E.
      Culturally sensitive communication at the end-of-life in the intensive care unit: a systematic review.
      the nature and scope of bereavement support measures for family;
      • Beiermann M.
      • Kalowes P.
      • Dyo M.
      • Mondor A.
      Family members' and intensive care unit nurses' response to the ECG Memento© during the bereavement period.
      • Efstathiou N.
      • Walker W.
      • Metcalfe A.
      • Vanderspank-Wright B.
      The state of bereavement support in adult intensive care: a systematic review and narrative synthesis.
      • Stayt L.C.
      Death, empathy and self preservation: the emotional labour of caring for families of the critically ill in adult intensive care.
      nurse self-care;
      • Malloy P.
      • Thrane S.
      • Winston T.
      • Virani R.
      • Kelly K.
      Do nurses who care for patients in palliative and end-of-life settings perform good self-care?.
      ,
      • Rose J.
      • Glass N.
      An Australian investigation of emotional work, emotional well-being and professional practice: an emancipatory inquiry.
      and debriefing.
      • Coombs M.
      • Mitchell M.
      • James S.
      • Wetzig K.
      Intensive care bereavement practices across New Zealand and Australian intensive care units: a qualitative content analysis.
      In addition to theoretical education, opportunities for clinical support at the bedside and for nurses to learn through mentoring, formal and informal role modelling,
      • Ranse K.
      • Yates P.
      • Coyer F.
      Modelling end-of-life care practices: factors associated with critical care nurse engagement in care provision.
      ,
      • Nordgren L.
      • Olsson H.
      Palliative care in a coronary care unit: a qualitative study of physicians' and nurses' perceptions.
      ,
      • Wiegand D.L.
      • Cheon J.
      • Netzer G.
      Seeing the patient and family through: nurses and physicians experiences with withdrawal of life-sustaining therapy in the ICU.
      and supported clinical exposure to end-of-life care situations at a pace commensurate with the nurse's individual readiness,
      • Vanderspank-Wright B.
      • Fothergill-Bourbonnais F.
      • Malone-Tucker S.
      • Slivar S.
      Learning end-of-life care in ICU: strategies for nurses new to ICU.
      are essential.

      2. Aim

      The aim of this discussion article was to develop a Position Statement that reflected the most relevant evidence and information related to end-of-life care for adult patients in Australian critical care practice settings.

      2.1 Definitions and terminology

      For the purposes of this Position Statement, the term “critical care” will be used to refer to critical care and intensive care, a specialty and an area specifically staffed and equipped for the continuous care of critically ill patients.
      Australian College of Critical Care Nurses
      Practice standards for specialist critical care nurses.
      “End-of-life care” “includes physical, spiritual and psychosocial assessment, and care and treatment delivered by health professionals … includes support of families and carers, and care of the patient's body after their death”
      General Medical Council
      Treatment and care towards the end of life: good practice in decision making Manchester.
      and typically refers to the last 12 months before death.
      Australian Institute of Health and Welfare
      Australia's Health 2015. Australia's health series No. 15. Cat no. 199.
      The term “family” is used to refer to “those who are closest to the patient in knowledge, care, and affection. This may include the biological family, the family of acquisition (related by marriage or contract), and the family and friends of choice”.
      Australian Commission on Safety and Quality in Health Care
      National consensus statement: essential elements for safe and high quality end-of-life care.
      For this Position Statement, the term “nurse” is used to refer to all registered nurses working in critical care settings, including those with or without specialist critical care postgraduate education.

      3. Development steps

      The Australian College of Critical Care Nurses (ACCCN) is a not-for-profit membership–based organisation representing critical care nurses across Australia.

      Australian College of Critical Care Nurses. ACCCN - Australian College of Critical Care Nurses 2021 [cited 2021 14 May]. Available from: https://www.acccn.com.au/about-us/our-association.

      The aims of the ACCCN include the provision of leadership, representation, development, and support for critical care nurses.

      Australian College of Critical Care Nurses. ACCCN - Australian College of Critical Care Nurses 2021 [cited 2021 14 May]. Available from: https://www.acccn.com.au/about-us/our-association.

      In-principle support was provided by the ACCCN National Board for the development of this Position Statement, with a request to involve ACCCN members with clinical currency as ‘experts’, as a way of ensuring the resultant Position Statement would be meaningful to practising critical care nurses and also to provide a professional development opportunity for interested critical care nurses. The Position Statement was developed using a five-step process.

      3.1 Creation of an academic expert team

      To ensure the Position Statement was informed by research evidence and was also clinically relevant and meaningful, a staged process was used to guide its development. As a first step, ACCCN members with demonstrated expertise in end-of-life care research were invited to participate in the first stage of the Position Statement development. Four academics committed to undertaking a comprehensive review of the literature to guide the development of the Position Statement and practice recommendations.

      3.2 Literature review

      A literature search was conducted between June and July, 2020 in CINAHL Complete, Medline, and EMBASE to locate research evidence related to multiple key elements of end-of-life care in critical care. Medical Subject Headings (MeSH) or equivalent terms/phrases according to each database (e.g. CINAHL Subject Headings) for each element and/or keywords were combined with ‘critical care’, ‘intensive care’, ‘ICU’, ‘end-of-life care’, ‘palliative care’, ‘death’, and ‘dying’ (Table 1). In addition to the articles retrieved in the original searches, a process of forward and backward chaining was undertaken to locate additional research evidence either cited by or citing articles retrieved in the original search and those citing articles retrieved in the original search.
      Table 1Search strategy.
      bereav∗

      child∗

      comfort

      communicat∗

      cultur∗

      “decision making”

      educat∗

      family

      family-cent∗red

      grief

      keepsake

      memento

      “memory making”

      palliat∗

      “place of death”

      presen∗

      visit∗
















      AND
      CCU

      Critical Care

      Death

      Dying

      End-of-Life

      End-of-Life Care

      ICU

      Intensive Care

      Palliative Care
      Quotation marks were used to ensure phrases are searched for in the exact order as written. The asterisk was used as a truncation wildcard to find all words with the same root term.
      In developing this Position Statement, preference was given to Australian or Australasian research evidence from the last 10 y; however, older research publications were used where newer research evidence was not available or the newer evidence was insufficient on its own to inform practice recommendations. Similarly, international research publications were included where Australian or Australasian research evidence was sparse. Only research publications pertaining to adult populations and published in English in peer-reviewed journals were included and used to guide drafting of the practice recommendations. Publications were not assessed for quality; rather articles utilising any methodology and/or sample size were included, so long as the findings were considered to contribute to the development of practice recommendations. An a priori decision was made to not include other position statements and/or practice recommendations as in some cases, these are based wholly or in part on expert opinion or consensus, rather than on research evidence.

      3.3 Establishment of a clinical expert review panel

      An opportunity for critical care nurses to participate was advertised in the ACCCN newsletter, via an Expression of Interest process. To be eligible to participate, critical care nurses had to hold current financial membership of the ACCCN, be working primarily in a clinical capacity (at least 0.5FTE), have a minimum of 12 months critical care experience, and have experience with and interest in providing end-of-life care. For the purposes of this process, given that any nurse working in critical care may be required to care for a dying patient, irrespective of role, seniority, or qualification, these nurses were considered expert. A total of 11 applications were received, with 10 applicants meeting the eligibility criteria. Participants had a mean of 9 y (range 3–15 y) of experience in critical care, with eight of the 10 participants reporting a postgraduate critical care qualification (Table 2).
      Table 2Demographics – linical xpert eview anel (N = 10).
      Variable
      Mean (range)
      Years in critical care9 (3–15)
      Highest qualificationn (%)
       Master4 (40)
       Graduate diploma2 (20)
       Graduate certificate4 (40)
      Completed postgraduate critical care training
       Yes8 (80)
       No2 (20)
      State
       Victoria4 (40)
       New South Wales3 (30)
       Queensland2 (20)
       Australian Capital Territory1 (10)
      The 10 clinical experts were asked to commit to a two-stage process involving a modified eDelphi survey and online meeting. A copy of the draft Position Statement was sent via email, along with a link to a modified eDelphi survey, housed on the Qualtrics platform.
      Qualtrics
      Qualtrics XM Provo.
      The purpose of the survey was to measure the relevance of each practice recommendation. A four-point scale was used, where 1 = not relevant, 2 = somewhat relevant, 3 = quite relevant, and 4 = highly relevant.
      • Davis L.L.
      Instrument review: getting the most from a panel of experts.
      • Grant J.S.
      • Davis L.L.
      Selection and use of content experts for instrument development.
      • Lynn M.R.
      Determination and quantification of content validity.
      • Polit D.F.
      • Beck C.T.
      The content validity index: are you sure you know what's being reported? Critique and recommendations.
      Using the relevance ratings provided, the item-level content validity (I-CVI) of each practice recommendation was calculated by dividing the number of experts that rated the items as 3 or 4, by 10, the number of clinical experts. An I-CVI score at or above 0.80 was considered satisfactory for I-CVI.
      • Lynn M.R.
      Determination and quantification of content validity.
      ,
      • Polit D.F.
      • Beck C.T.
      The content validity index: are you sure you know what's being reported? Critique and recommendations.
      I-CVI ratings for the draft practice recommendations ranged from 0.70 to 1.00, with only two items scoring below 0.80.
      • Grant J.S.
      • Davis L.L.
      Selection and use of content experts for instrument development.
      • Lynn M.R.
      Determination and quantification of content validity.
      • Polit D.F.
      • Beck C.T.
      The content validity index: are you sure you know what's being reported? Critique and recommendations.
      Overall content validity (S-CVI) was also determined by calculating the sum of I-CVI scores for all practice recommendations and then dividing by the total number of recommendations. The S-CVI for the practice recommendations was 0.94, with an S-CVI equal to or greater than 0.90 considered satisfactory.
      • Grant J.S.
      • Davis L.L.
      Selection and use of content experts for instrument development.
      • Lynn M.R.
      Determination and quantification of content validity.
      • Polit D.F.
      • Beck C.T.
      The content validity index: are you sure you know what's being reported? Critique and recommendations.
      In both the eDelphi survey and online meeting, the clinical experts were asked to provide face validity, with suggested additions, deletions, or modifications to the practice recommendations. Results of the eDelphi survey were presented for discussion during the online meeting. The two practice recommendations that initially received an I-CVI score of 0.70 were discussed and modified by consensus to achieve group agreement. This process ensured the final practice recommendations are meaningful and practical for critical care nursing practice in Australia.

      3.4 Review by ACCCN board members

      To ensure the Position Statement aligned with ACCCN objectives to provide practical and relevant guidance for critical care nurses, two members of the ACCCN National Board undertook an independent review of the Position Statement and provided recommendations for all sections of the Position Statement excluding the practice recommendations.

      3.5 Approval by the ACCCN National Board

      Feedback from the clinical expert review panel and ACCCN board members was used to guide revision and refinement of the Position Statement, which was subsequently submitted to and approved by the ACCCN National Board in February, 2021.

      4. Review of the literature

      Critical care admissions account for 1.4% (or 161,000) of Australian hospital admissions every year,
      • Australian Insitute of Health and Welfare
      and as many as 15% of these patients will die in critical care settings.
      • Trankle S.
      Is good death possible in Australian critical care and acute care settings? Physician experiences with end-of-life care.
      Patient death is most often the result of consensus regarding treatment futility,
      • Morparia K.
      • Dickerman M.
      • Hoehn K.S.
      Futility: unilateral decision making is not the default for pediatric intensivists.
      followed by a planned and deliberate withdrawal of life-sustaining treatment.
      • Psirides A.J.
      • Sturland S.
      Withdrawal of active treatment in intensive care: what is stopped-comparison between belief and practice.
      Whilst a tension can exist between the provision of life-sustaining treatment in an environment with high mortality rates,
      • Wunsch H.
      • Harrison D.A.
      • Harvey S.
      • Rowan K.
      End-of-life decisions: a cohort study of the withdrawal of all active treatment in intensive care units in the United Kingdom.
      nurses are key to the provision of high-quality end-of-life care.
      • Coombs M.
      • Parker R.
      • Ranse K.
      • Endacott R.
      • Bloomer M.
      An integrative review of how families are prepared for, and supported during withdrawal of life-sustaining treatment in intensive care.

      4.1 Family-centred care

      Family-centred care is widely accepted as an important component of patient care in critical care and is of particular importance at the end of life.
      • Ranse K.
      • Yates P.
      • Coyer F.
      Modelling end-of-life care practices: factors associated with critical care nurse engagement in care provision.
      ,
      • Mitchell M.L.
      • Coyer F.
      • Kean S.
      • Stone R.
      • Murfield J.
      • Dwan T.
      Patient, family-centred care interventions within the adult ICU setting: an integrative review.
      Family-centred care is demonstrated by timely, open, and sensitive communication initially directed towards identified primary family spokespersons,
      • Bloomer M.
      • Endacott R.
      • Ranse K.
      • Coombs M.
      Navigating communication with families during withdrawal of life-sustaining treatment in intensive care: a qualitative descriptive study in Australia and New Zealand.
      open flexible visiting hours, specific consideration of family needs including facilities within or near the intensive care unit (ICU), and the provision of bereavement supports.
      • Coombs M.
      • Mitchell M.
      • James S.
      • Wetzig K.
      Intensive care bereavement practices across New Zealand and Australian intensive care units: a qualitative content analysis.
      A patient- and family-centred approach to end-of-life care ensures that care is individualised to respect the wishes of the patient and family and is sensitive and adaptive to their cultural and religious customs, values, and beliefs.
      • Brooks L.A.
      • Bloomer M.J.
      • Manias E.
      Culturally sensitive communication at the end-of-life in the intensive care unit: a systematic review.
      ,
      • Bloomer M.J.
      • Al-Mutair A.
      Ensuring cultural sensitivity for Muslim patients in the Australian ICU: considerations for care.
      To ensure accurate communication, this includes use of professional interpreters where language barriers exist.
      • Brooks L.A.
      • Bloomer M.J.
      • Manias E.
      Culturally sensitive communication at the end-of-life in the intensive care unit: a systematic review.
      Given that culture and attitudes towards death and dying may differ between the critical care nurse, patient, and family,
      • Brooks L.A.
      • Bloomer M.J.
      • Manias E.
      Culturally sensitive communication at the end-of-life in the intensive care unit: a systematic review.
      ,
      • Gallagher A.
      • Bousso R.S.
      • McCarthy J.
      • Kohlen H.
      • Andrews T.
      • Paganini M.C.
      • et al.
      Negotiated reorienting: a grounded theory of nurses' end-of-life decision-making in the intensive care unit.
      critical care nurses need specific knowledge and skills that include highly developed intercultural communication skills.
      • Brooks L.A.
      • Bloomer M.J.
      • Manias E.
      Culturally sensitive communication at the end-of-life in the intensive care unit: a systematic review.
      ,
      • Northam H.L.
      • Hercelinskyj G.
      • Grealish L.
      • Mak A.S.
      Developing graduate student competency in providing culturally sensitive end of life care in critical care environments - a pilot study of a teaching innovation.
      Respect for diverse customs, values, and beliefs
      • Northam H.L.
      • Hercelinskyj G.
      • Grealish L.
      • Mak A.S.
      Developing graduate student competency in providing culturally sensitive end of life care in critical care environments - a pilot study of a teaching innovation.
      is required to provide culturally sensitive care at the end of life. Cultural diversity, as it may pertain to clinicians as well as the patient and family, must also be considered during end-of-life care planning, decision-making, and physical care.
      • Gallagher A.
      • Bousso R.S.
      • McCarthy J.
      • Kohlen H.
      • Andrews T.
      • Paganini M.C.
      • et al.
      Negotiated reorienting: a grounded theory of nurses' end-of-life decision-making in the intensive care unit.
      Developing a relationship with and caring for a dying patient's family is as important as caring for the patient.
      • Bloomer M.J.
      • Morphet J.
      • O'Connor M.
      • Lee S.
      • Griffiths D.
      Nursing care of the family before and after a death in the ICU-An exploratory pilot study.
      • Efstathiou N.
      • Walker W.
      Intensive care nurses' experiences of providing end-of-life care after treatment withdrawal: a qualitative study.
      • Fridh I.
      • Forsberg A.
      • Bergbom I.
      Doing one's utmost: nurses' descriptions of caring for dying patients in an intensive care environment.
      • Halcomb E.
      • Daly J.
      • Jackson D.
      • Davidson P.
      An insight into Australian nurses' experience of withdrawal/withholding of treatment in the ICU.
      • Stokes H.
      • Vanderspank-Wright B.
      • Bourbonnais F.F.
      • Wright D.K.
      Meaningful experiences and end-of-life care in the intensive care unit: a qualitative study.
      Sharing information about the patient's unique characteristics and personality as a way of emphasising personhood,
      • Haugdahl H.S.
      • Eide R.
      • Alexandersen I.
      • Paulsby T.E.
      • Stjern B.
      • Lund S.B.
      • et al.
      From breaking point to breakthrough during the ICU stay: a qualitative study of family members' experiences of long-term intensive care patients' pathways towards survival.
      the use of touch or physical presence, and alignment between verbal and nonverbal communication are key features of the nurse–patient and nurse–family relationship.
      • Efstathiou N.
      • Walker W.
      Intensive care nurses' experiences of providing end-of-life care after treatment withdrawal: a qualitative study.
      ,
      • Stokes H.
      • Vanderspank-Wright B.
      • Bourbonnais F.F.
      • Wright D.K.
      Meaningful experiences and end-of-life care in the intensive care unit: a qualitative study.
      ,
      • Noome M.
      • Beneken Genaamd Kolmer D.M.
      • van Leeuwen E.
      • Dijkstra B.M.
      • Vloet L.C.M.
      The nursing role during end-of-life care in the intensive care unit related to the interaction between patient, family and professional: an integrative review.
      ,
      • Ranse K.
      • Yates P.
      • Coyer F.
      End-of-life care in the intensive care setting: a descriptive exploratory qualitative study of nurses' beliefs and practices.
      Ensuring family members are able to spend time at the bedside
      • Kisorio L.C.
      • Langley G.C.
      End-of-life care in intensive care unit: family experiences.
      and hold vigil
      • Bloomer M.J.
      • Morphet J.
      • O'Connor M.
      • Lee S.
      • Griffiths D.
      Nursing care of the family before and after a death in the ICU-An exploratory pilot study.
      is important and not only contributes to family satisfaction
      • Monroe M.
      • Wofford L.
      Open visitation and nurse job satisfaction: an integrative review.
      but also provides an opportunity for nurses to support and prepare family members for what may occur in the lead up to and after death.
      • Bloomer M.J.
      • Morphet J.
      • O'Connor M.
      • Lee S.
      • Griffiths D.
      Nursing care of the family before and after a death in the ICU-An exploratory pilot study.
      These actions contribute to family perceptions of a ‘good death’
      • Stokes H.
      • Vanderspank-Wright B.
      • Bourbonnais F.F.
      • Wright D.K.
      Meaningful experiences and end-of-life care in the intensive care unit: a qualitative study.
      and satisfaction with care.
      • Monroe M.
      • Wofford L.
      Open visitation and nurse job satisfaction: an integrative review.
      The practice of collecting and creating mementos throughout a patient's stay in critical care and after death
      • Johansson M.
      • Wåhlin I.
      • Magnusson L.
      • Runeson I.
      • Hanson E.
      Family members' experiences with intensive care unit diaries when the patient does not survive.
      • Neville T.H.
      • Clarke F.
      • Takaoka A.
      • Sadik M.
      • Vanstone M.
      • Phung P.
      • et al.
      Keepsakes at the end of life.
      • Riegel M.
      • Randall S.
      • Buckley T.
      Memory making in end-of-life care in the adult intensive care unit: a scoping review of the research literature.
      aids family grieving, with one study suggesting that mementos are provided for up to 75% of all deceased patients in critical care settings.
      • Neville T.H.
      • Clarke F.
      • Takaoka A.
      • Sadik M.
      • Vanstone M.
      • Phung P.
      • et al.
      Keepsakes at the end of life.
      Most mementos are provided to families by nursing staff after the patient has died
      • Neville T.H.
      • Clarke F.
      • Takaoka A.
      • Sadik M.
      • Vanstone M.
      • Phung P.
      • et al.
      Keepsakes at the end of life.
      and can include patient photos, word clouds, electrocardiogram rhythm strips, patient diaries, handprints, locks of hair, and patient name bands.
      • Coombs M.
      • Mitchell M.
      • James S.
      • Wetzig K.
      Intensive care bereavement practices across New Zealand and Australian intensive care units: a qualitative content analysis.
      ,
      • Coombs M.
      • Parker R.
      • Ranse K.
      • Endacott R.
      • Bloomer M.
      An integrative review of how families are prepared for, and supported during withdrawal of life-sustaining treatment in intensive care.
      ,
      • Beiermann M.
      • Kalowes P.
      • Dyo M.
      • Mondor A.
      Family members' and intensive care unit nurses' response to the ECG Memento© during the bereavement period.
      ,
      • Ranse K.
      • Yates P.
      • Coyer F.
      End-of-life care in the intensive care setting: a descriptive exploratory qualitative study of nurses' beliefs and practices.
      ,
      • Neville T.H.
      • Clarke F.
      • Takaoka A.
      • Sadik M.
      • Vanstone M.
      • Phung P.
      • et al.
      Keepsakes at the end of life.
      • Riegel M.
      • Randall S.
      • Buckley T.
      Memory making in end-of-life care in the adult intensive care unit: a scoping review of the research literature.
      • Erikson A.
      • McAdam J.
      Bereavement care in the adult intensive care unit: directions for practice.
      Mementos are thought to improve family understanding, create positive memories, and aid family coping.
      • Beiermann M.
      • Kalowes P.
      • Dyo M.
      • Mondor A.
      Family members' and intensive care unit nurses' response to the ECG Memento© during the bereavement period.
      ,
      • Johansson M.
      • Wåhlin I.
      • Magnusson L.
      • Runeson I.
      • Hanson E.
      Family members' experiences with intensive care unit diaries when the patient does not survive.
      • Neville T.H.
      • Clarke F.
      • Takaoka A.
      • Sadik M.
      • Vanstone M.
      • Phung P.
      • et al.
      Keepsakes at the end of life.
      • Riegel M.
      • Randall S.
      • Buckley T.
      Memory making in end-of-life care in the adult intensive care unit: a scoping review of the research literature.
      • Erikson A.
      • McAdam J.
      Bereavement care in the adult intensive care unit: directions for practice.
      • Erikson A.
      • Puntillo K.
      • McAdam J.
      Family members' opinions about bereavement care after cardiac intensive care unit patients' deaths.
      Yet not all families want or appreciate receiving mementos as they may represent a negative memory or do not compare to other possessions of the deceased person.
      • Johansson M.
      • Wåhlin I.
      • Magnusson L.
      • Runeson I.
      • Hanson E.
      Family members' experiences with intensive care unit diaries when the patient does not survive.
      ,
      • Erikson A.
      • McAdam J.
      Bereavement care in the adult intensive care unit: directions for practice.
      ,
      • Erikson A.
      • Puntillo K.
      • McAdam J.
      Family members' opinions about bereavement care after cardiac intensive care unit patients' deaths.
      The use of mementos should be considered on an individual basis, with consideration of family dynamics and culture as well as the timing of when mementos are offered.
      • Erikson A.
      • McAdam J.
      Bereavement care in the adult intensive care unit: directions for practice.
      ,
      • Erikson A.
      • Puntillo K.
      • McAdam J.
      Family members' opinions about bereavement care after cardiac intensive care unit patients' deaths.
      Consideration must also be given to the needs of child relatives of patients dying in critical care. Historically, child visitors in critical care units were discouraged owing to concerns over their young age, potential infection control issues, and fears over the emotional and psychological impacts on the child's wellbeing.
      • Knutsson S.
      • Bergbom I.
      Nurses' and physicians' viewpoints regarding children visiting/not visiting adult ICUs.
      • Desai P.P.
      • Flick S.L.
      • Knutsson S.
      • Brimhall A.S.
      Practices and perceptions of nurses regarding child visitation in adult intensive care units.
      • Clarke C.
      • Harrison D.
      The needs of children visiting on adult intensive care units: a review of the literature and recommendations for practice.
      • Kean S.
      Children and young people visiting an adult intensive care unit.
      • Knutsson S.
      • Bergbom I.
      Children's thoughts and feelings related to visiting critically ill relatives in an adult ICU: a qualitative study.
      Being able to see their unwell family member, however, may help to allay a child's imagined fears or anxieties, reduce any misconceptions about what is occurring,
      • Knutsson S.
      • Bergbom I.
      Children's thoughts and feelings related to visiting critically ill relatives in an adult ICU: a qualitative study.
      ,
      • Knutsson S.
      • Samuelsson I.P.
      • Hellström A.L.
      • Bergbom I.
      Children's experiences of visiting a seriously ill/injured relative on an adult intensive care unit.
      confirm their family member is safe,
      • Kean S.
      Children and young people visiting an adult intensive care unit.
      provide an opportunity to talk to or touch their loved one,
      • Knutsson S.
      • Bergbom I.
      Children's thoughts and feelings related to visiting critically ill relatives in an adult ICU: a qualitative study.
      ,
      • Knutsson S.
      • Samuelsson I.P.
      • Hellström A.L.
      • Bergbom I.
      Children's experiences of visiting a seriously ill/injured relative on an adult intensive care unit.
      and decrease the child's feelings of helplessness and guilt.
      • Clarke C.
      • Harrison D.
      The needs of children visiting on adult intensive care units: a review of the literature and recommendations for practice.
      ,
      • Knutsson S.
      • Samuelsson I.P.
      • Hellström A.L.
      • Bergbom I.
      Children's experiences of visiting a seriously ill/injured relative on an adult intensive care unit.
      Where a child's visit to the ICU can be facilitated, preparing the child for what they might see and hear and ensuring an opportunity for the child to ask questions and receive age-appropriate responses is key.
      • Clarke C.
      • Harrison D.
      The needs of children visiting on adult intensive care units: a review of the literature and recommendations for practice.
      ,
      • Knutsson S.E.
      • Otterberg C.L.
      • Bergbom I.L.
      Visits of children to patients being cared for in adult ICUs: policies, guidelines and recommendations.
      Nurses can work with adult family members to support the visit and minimise distress.
      • Clarke C.
      • Harrison D.
      The needs of children visiting on adult intensive care units: a review of the literature and recommendations for practice.
      For critical care nurses, the therapeutic relationship with family members of a dying patient can be a positive and rewarding aspect of end-of-life care.
      • Halcomb E.
      • Daly J.
      • Jackson D.
      • Davidson P.
      An insight into Australian nurses' experience of withdrawal/withholding of treatment in the ICU.
      ,
      • Ranse K.
      • Yates P.
      • Coyer F.
      End-of-life care in the intensive care setting: a descriptive exploratory qualitative study of nurses' beliefs and practices.
      It can also be a significant source of stress and emotional distress.
      • Bloomer M.J.
      • Morphet J.
      • O'Connor M.
      • Lee S.
      • Griffiths D.
      Nursing care of the family before and after a death in the ICU-An exploratory pilot study.
      ,
      • Efstathiou N.
      • Walker W.
      Intensive care nurses' experiences of providing end-of-life care after treatment withdrawal: a qualitative study.
      ,
      • Halcomb E.
      • Daly J.
      • Jackson D.
      • Davidson P.
      An insight into Australian nurses' experience of withdrawal/withholding of treatment in the ICU.
      ,
      • Stokes H.
      • Vanderspank-Wright B.
      • Bourbonnais F.F.
      • Wright D.K.
      Meaningful experiences and end-of-life care in the intensive care unit: a qualitative study.
      ,
      • Rivera-Romero N.
      • Ospina Garzón H.P.
      • Henao-Castaño A.M.
      The experience of the nurse caring for families of patients at the end of life in the intensive care unit.
      • Lief L.
      • Berlin D.A.
      • Maciejewski R.C.
      • Westman L.
      • Su A.
      • Cooper Z.R.
      • et al.
      Dying patient and family contributions to nurse distress in the ICU.
      • Leung D.
      • Blastorah M.
      • Nusdorfer L.
      • Jeffs A.
      • Jung J.
      • Howell D.
      • et al.
      Nursing patients with chronic critical illness and their families: a qualitative study.
      For some nurses, managing family distress and grief and their own emotions
      • Bloomer M.J.
      • Morphet J.
      • O'Connor M.
      • Lee S.
      • Griffiths D.
      Nursing care of the family before and after a death in the ICU-An exploratory pilot study.
      ,
      • Halcomb E.
      • Daly J.
      • Jackson D.
      • Davidson P.
      An insight into Australian nurses' experience of withdrawal/withholding of treatment in the ICU.
      and disengaging from the relationship after the patient has died can be difficult.
      • Efstathiou N.
      • Walker W.
      Intensive care nurses' experiences of providing end-of-life care after treatment withdrawal: a qualitative study.
      Many critical care nurses feel unprepared for this,
      • Nordgren L.
      • Olsson H.
      Palliative care in a coronary care unit: a qualitative study of physicians' and nurses' perceptions.
      citing both a lack of guidelines and education to underpin the scope of the boundaries of their relationship with families.
      • Nordgren L.
      • Olsson H.
      Palliative care in a coronary care unit: a qualitative study of physicians' and nurses' perceptions.
      ,
      • Bloomer M.J.
      • Morphet J.
      • O'Connor M.
      • Lee S.
      • Griffiths D.
      Nursing care of the family before and after a death in the ICU-An exploratory pilot study.
      ,
      • Efstathiou N.
      • Walker W.
      Intensive care nurses' experiences of providing end-of-life care after treatment withdrawal: a qualitative study.
      ,
      • Rivera-Romero N.
      • Ospina Garzón H.P.
      • Henao-Castaño A.M.
      The experience of the nurse caring for families of patients at the end of life in the intensive care unit.
      It is important that critical care nurses have access to opportunities for debriefing and counselling, where desired.
      • Coombs M.
      • Mitchell M.
      • James S.
      • Wetzig K.
      Intensive care bereavement practices across New Zealand and Australian intensive care units: a qualitative content analysis.

      4.2 Communication and decision-making

      Effective communication and the provision of information are identified as critically important to end-of-life care in critical care.
      • Bloomer M.
      • Endacott R.
      • Ranse K.
      • Coombs M.
      Navigating communication with families during withdrawal of life-sustaining treatment in intensive care: a qualitative descriptive study in Australia and New Zealand.
      ,
      • Kisorio L.C.
      • Langley G.C.
      End-of-life care in intensive care unit: family experiences.
      ,
      • Ranse K.
      • Yates P.
      • Coyer F.
      End-of-life care practices of critical care nurses: a national cross-sectional survey.
      Whilst talking with the patient should continue even when sedated or nearing death, nurses also communicate caring through the use of touch.
      • Hov R.
      • Hedelin B.
      • Athlin E.
      Good nursing care to ICU patients on the edge of life.
      Key for families is the desire to be informed of what is going on and what to expect
      • Kisorio L.C.
      • Langley G.C.
      End-of-life care in intensive care unit: family experiences.
      and to have the opportunity to support the patient's previously expressed goals of care, even if not formally documented as part of an advance health directive.
      • Mendoza J.L.
      • Burns C.M.
      ‘Who will talk for me?’ Next of Kin is not necessarily the preferred substitute decision maker: findings from an Australian intensive care unit.
       Bedside communication with family provides time for them to ask questions, seek clarification, and understand what is going on and what to expect.
      • Kisorio L.C.
      • Langley G.C.
      End-of-life care in intensive care unit: family experiences.
      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.
      • Ranse K.
      • Bloomer M.
      • Coombs M.
      • Endacott R.
      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.
      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.
      • Bloomer M.
      • Endacott R.
      • Ranse K.
      • Coombs M.
      Navigating communication with families during withdrawal of life-sustaining treatment in intensive care: a qualitative descriptive study in Australia and New Zealand.
      Verbal and nonverbal cues provide an indication of family readiness for information.
      • Bloomer M.
      • Endacott R.
      • Ranse K.
      • Coombs M.
      Navigating communication with families during withdrawal of life-sustaining treatment in intensive care: a qualitative descriptive study in Australia and New Zealand.
      Word choice and pace of communication should also be tailored to individual family member's needs and preferences,
      • Bloomer M.
      • Endacott R.
      • Ranse K.
      • Coombs M.
      Navigating communication with families during withdrawal of life-sustaining treatment in intensive care: a qualitative descriptive study in Australia and New Zealand.
      accompanied by emotional support.
      • Milic M.M.
      • Puntillo K.
      • Turner K.
      • Joseph D.
      • Peters N.
      • Ryan R.
      • et al.
      Communicating with patients' families and physicians about prognosis and goals of care.
      Even when the news is bad, families can experience a sense of relief from receiving information that is sensitively delivered.
      • Kisorio L.C.
      • Langley G.C.
      End-of-life care in intensive care unit: family experiences.
      In addition to bedside communication, formal family meetings are also key to informing families about the patient's condition, prognosis,
      • Jinsoo M.
      • Lee Y.J.
      • Park G.
      • Shin J.Y.
      • Yoon J.
      • Im Park S.
      • et al.
      Communication with family members of patients in the intensive care unit: lessons from multidisciplinary family meetings.
      and goals of care.
      • Anderson W.G.
      • Puntillo K.
      • Boyle D.
      • Barbour S.
      • Turner K.
      • Cimino J.
      • et al.
      ICU bedside nurses' involvement in palliative care communication: a multicenter survey.
      ,
      • Mendoza J.L.
      • Burns C.M.
      ‘Who will talk for me?’ Next of Kin is not necessarily the preferred substitute decision maker: findings from an Australian intensive care unit.
      Most family meetings focus on the withdrawal or withholding of life-sustaining treatments.
      • Kisorio L.C.
      • Langley G.C.
      End-of-life care in intensive care unit: family experiences.
      ,
      • Jinsoo M.
      • Lee Y.J.
      • Park G.
      • Shin J.Y.
      • Yoon J.
      • Im Park S.
      • et al.
      Communication with family members of patients in the intensive care unit: lessons from multidisciplinary family meetings.
      ,
      • Piscitello G.M.
      • Parham Iii, W.M.
      • Huber M.T.
      • Siegler M.
      • Parker W.F.
      The timing of family meetings in the medical intensive care Unit.
      For family members, who may feel they know most about the patient's preferences, the opportunity to act as patient advocate in the discussions and decision-making process is important.
      • Kisorio L.C.
      • Langley G.C.
      End-of-life care in intensive care unit: family experiences.
      The timing of family meetings, the difficult nature of the conversations, and lack of consensus regarding treatment all pose challenges.
      • Brooks L.A.
      • Manias E.
      • Nicholson P.
      Communication and decision-making about end-of-life care in the intensive care unit.
      Given critical care nurses establish a rapport with families,
      • Jinsoo M.
      • Lee Y.J.
      • Park G.
      • Shin J.Y.
      • Yoon J.
      • Im Park S.
      • et al.
      Communication with family members of patients in the intensive care unit: lessons from multidisciplinary family meetings.
      their inclusion in family meetings is central to supporting families.
      • Kisorio L.C.
      • Langley G.C.
      End-of-life care in intensive care unit: family experiences.
      ,
      • White D.
      • Meeker M.
      Guiding the process of dying: the personal impact on nurses.
      More than 80% of deaths in ICUs are the result of a decision to withdraw or withhold life-sustaining treatment.
      • Bloomer M.
      • Tiruvoipati R.
      • Tsiripillis M.
      • Botha J.
      End of life management of adult patients in an Australian metropolitan intensive care unit: a retrospective observational study.
      Where family meetings include a decision to withdraw or withhold life-sustaining treatment, consideration for place of death is important. A single room in the critical care unit is preferred for family involvement and privacy.
      • Brooks L.A.
      • Manias E.
      • Nicholson P.
      Barriers, enablers and challenges to initiating end-of-life care in an Australian intensive care unit context.
      However, consultation with the patient and family may include consideration of transfer to a ward, hospice, or home,
      • Coombs M.A.
      • Darlington A.-S.E.
      • Long-Sutehall T.
      • Pattison N.
      • Richardson A.
      Transferring patients home to die: what is the potential population in UK critical care units?.
      ,
      • Timmins F.
      • Parissopoulos S.
      • Plakas S.
      • Naughton M.T.
      • de Vries J.M.
      • Fouka G.
      Privacy at end of life in ICU: a review of the literature.
      and/or exploring opportunities and feasibility for facilitating dying on country for Aboriginal and Torres Strait Islanders.
      • O'Brien A.P.
      • Bloomer M.J.
      • McGrath P.
      • Clarke K.
      • Martin T.
      • Lock M.
      • et al.
      Considering Aboriginal palliative care models: the challenges for mainstream services.

      4.3 Patient comfort and family support

      Promoting patient comfort is central to the nurse's role in the provision end-of-life care,
      • Su A.
      • Lief L.
      • Berlin D.
      • Cooper Z.
      • Ouyang D.
      • Holmes J.
      • et al.
      Beyond pain: nurses' assessment of patient suffering, dignity, and dying in the intensive care unit.
      ,
      • Epker J.L.
      • Bakker J.
      • Lingsma H.F.
      • Kompanje E.J.
      An observational study on a protocol for withdrawal of life-sustaining measures on two non-academic intensive care units in The Netherlands: few signs of distress, no suffering?.
      and includes the management of pain, anxiety, dyspnoea, restlessness, and psychological distress
      • Su A.
      • Lief L.
      • Berlin D.
      • Cooper Z.
      • Ouyang D.
      • Holmes J.
      • et al.
      Beyond pain: nurses' assessment of patient suffering, dignity, and dying in the intensive care unit.
      through both pharmacological and nonpharmacological strategies.
      • Vanderspank-Wright B.
      • Fothergill-Bourbonnais F.
      • Malone-Tucker S.
      • Slivar S.
      Learning end-of-life care in ICU: strategies for nurses new to ICU.
      Pharmacological strategies may include administration of antimuscarinics, analgesia, and sedation
      • Vanderspank-Wright B.
      • Fothergill-Bourbonnais F.
      • Malone-Tucker S.
      • Slivar S.
      Learning end-of-life care in ICU: strategies for nurses new to ICU.
      ,
      • Stokes H.
      • Vanderspank-Wright B.
      • Bourbonnais F.F.
      • Wright D.K.
      Meaningful experiences and end-of-life care in the intensive care unit: a qualitative study.
      ,
      • Epker J.L.
      • Bakker J.
      • Lingsma H.F.
      • Kompanje E.J.
      An observational study on a protocol for withdrawal of life-sustaining measures on two non-academic intensive care units in The Netherlands: few signs of distress, no suffering?.
      and/or use of oxygen.
      • Stokes H.
      • Vanderspank-Wright B.
      • Bourbonnais F.F.
      • Wright D.K.
      Meaningful experiences and end-of-life care in the intensive care unit: a qualitative study.
      Nonpharmacological strategies include removing unnecessary monitoring and equipment, repositioning, hygiene, and psychosocial support.
      • Vanderspank-Wright B.
      • Fothergill-Bourbonnais F.
      • Malone-Tucker S.
      • Slivar S.
      Learning end-of-life care in ICU: strategies for nurses new to ICU.
      ,
      • Stokes H.
      • Vanderspank-Wright B.
      • Bourbonnais F.F.
      • Wright D.K.
      Meaningful experiences and end-of-life care in the intensive care unit: a qualitative study.
      These are all considered essential aspects of providing a good death.
      • Stokes H.
      • Vanderspank-Wright B.
      • Bourbonnais F.F.
      • Wright D.K.
      Meaningful experiences and end-of-life care in the intensive care unit: a qualitative study.
      In addition, nurses are able to act as a liaison between members of the interprofessional clinical team, the patient (where possible), and the patient's family. This will help to ensure a shared understanding of the plan of care
      • Coombs M.
      • Parker R.
      • Ranse K.
      • Endacott R.
      • Bloomer M.
      An integrative review of how families are prepared for, and supported during withdrawal of life-sustaining treatment in intensive care.
      and ascertain preferences for the timing of withdrawal of life-sustaining treatment, whether family would like to be present in the lead up to patient death,
      • Long-Sutehall T.
      • Willis H.
      • Palmer R.
      • Ugboma D.
      • Addington-Hall J.
      • Coombs M.
      Negotiated dying: a grounded theory of how nurses shape withdrawal of treatment in hospital critical care units.
      the provision, or at least perception of privacy for the family and encouraging family to personalise the space.
      • Stokes H.
      • Vanderspank-Wright B.
      • Bourbonnais F.F.
      • Wright D.K.
      Meaningful experiences and end-of-life care in the intensive care unit: a qualitative study.
      It is also most important family members are prepared for what they may see or hear as the patient approaches death, such as changes in their breathing pattern or sounds, changes in the level of consciousness, movement, temperature, and colour.
      • Wiegand D.L.
      • Cheon J.
      • Netzer G.
      Seeing the patient and family through: nurses and physicians experiences with withdrawal of life-sustaining therapy in the ICU.
      ,
      • Kirchhoff K.T.
      • Conradt K.L.
      • Anumandla P.R.
      ICU nurses' preparation of families for death of patients following withdrawal of ventilator support.

      4.4 Organ donation

      In addition to caring for the dying patient and supporting their family, nurses have an essential role in supporting organ donation processes
      • Cignarella A.
      • Redley B.
      • Bucknall T.
      Organ donation within the intensive care unit: a retrospective audit.
      ,
      • Fridh I.
      Caring for the dying patient in the ICU–the past, the present and the future.
      whilst remaining impartial in relation to the donation decision.
      • Mills L.
      • Koulouglioti C.
      How can nurses support relatives of a dying patient with the organ donation option?.
      Nurses may be involved in early assessment of patients for potential organ donation and liaison with organ donation teams.
      • Cignarella A.
      • Redley B.
      • Bucknall T.
      Organ donation within the intensive care unit: a retrospective audit.
      However, given the potential for family distress associated with organ donation conversations,
      • Cignarella A.
      • Redley B.
      • Bucknall T.
      Organ donation within the intensive care unit: a retrospective audit.
      specifically trained organ donation coordinators will lead communication with family members. Nursing care for the potential organ donor continues, including ensuring adequate oxygenation and care for the person's organs, whilst also continuing to provide simple and clear information that is communicated with sensitivity at all times.
      • Mills L.
      • Koulouglioti C.
      How can nurses support relatives of a dying patient with the organ donation option?.

      4.5 Care after death

      After death, nursing care for the family continues.
      • Efstathiou N.
      • Walker W.
      • Metcalfe A.
      • Vanderspank-Wright B.
      The state of bereavement support in adult intensive care: a systematic review and narrative synthesis.
      ,
      • Bloomer M.J.
      • Morphet J.
      • O'Connor M.
      • Lee S.
      • Griffiths D.
      Nursing care of the family before and after a death in the ICU-An exploratory pilot study.
      Nurses facilitate time for families to be with the deceased
      • Efstathiou N.
      • Walker W.
      • Metcalfe A.
      • Vanderspank-Wright B.
      The state of bereavement support in adult intensive care: a systematic review and narrative synthesis.
      ,
      • Bloomer M.J.
      • Morphet J.
      • O'Connor M.
      • Lee S.
      • Griffiths D.
      Nursing care of the family before and after a death in the ICU-An exploratory pilot study.
      and perform or observe cultural and religious rituals before and after death.
      • Brooks L.A.
      • Bloomer M.J.
      • Manias E.
      Culturally sensitive communication at the end-of-life in the intensive care unit: a systematic review.
      ,
      • Bloomer M.J.
      • Al-Mutair A.
      Ensuring cultural sensitivity for Muslim patients in the Australian ICU: considerations for care.
      ,
      • Northam H.L.
      • Hercelinskyj G.
      • Grealish L.
      • Mak A.S.
      Developing graduate student competency in providing culturally sensitive end of life care in critical care environments - a pilot study of a teaching innovation.
      Given that the psychological impact of death on family members is well recognised,
      • Efstathiou N.
      • Walker W.
      • Metcalfe A.
      • Vanderspank-Wright B.
      The state of bereavement support in adult intensive care: a systematic review and narrative synthesis.
      supporting families in their immediate grief and bereavement is an essential component of care after death.
      • Bloomer M.J.
      • Morphet J.
      • O'Connor M.
      • Lee S.
      • Griffiths D.
      Nursing care of the family before and after a death in the ICU-An exploratory pilot study.
      One significant challenge in the provision of bereavement support is that clinicians may not feel adequately prepared to address the needs of bereaved families
      • Bloomer M.J.
      • Morphet J.
      • O'Connor M.
      • Lee S.
      • Griffiths D.
      Nursing care of the family before and after a death in the ICU-An exploratory pilot study.
      or be aware of the range of actions and services that can contribute to supporting family bereavement. Aside from brochures about external bereavement support services available to families after a death,
      • Efstathiou N.
      • Walker W.
      • Metcalfe A.
      • Vanderspank-Wright B.
      The state of bereavement support in adult intensive care: a systematic review and narrative synthesis.
      bereavement support activities can also include a follow-up phone call to family members, a sympathy card sent on behalf of the critical care team, and memorial services run by the health service/hospital.
      • Erikson A.
      • Puntillo K.
      • McAdam J.
      Family members' opinions about bereavement care after cardiac intensive care unit patients' deaths.
      For those initiatives that involve making contact with bereaved family after death, the person who makes contact should be someone experienced with bereavement support.
      • Erikson A.
      • Puntillo K.
      • McAdam J.
      Family members' opinions about bereavement care after cardiac intensive care unit patients' deaths.

      4.6 Nurse self-care

      Whilst providing quality end-of-life care can be uniquely satisfying for nurses,
      • White D.
      • Meeker M.
      Guiding the process of dying: the personal impact on nurses.
      this care does include a component of emotional work.
      • Stayt L.C.
      Death, empathy and self preservation: the emotional labour of caring for families of the critically ill in adult intensive care.
      The significance of death and establishing and maintaining interpersonal relationships with family may be sources of emotional stress for the nurse.
      • Stayt L.C.
      Death, empathy and self preservation: the emotional labour of caring for families of the critically ill in adult intensive care.
      For this reason, self-care is essential for nurses to remain efficient and successful in their work.
      • Malloy P.
      • Thrane S.
      • Winston T.
      • Virani R.
      • Kelly K.
      Do nurses who care for patients in palliative and end-of-life settings perform good self-care?.
      ,
      • White D.
      • Meeker M.
      Guiding the process of dying: the personal impact on nurses.
      This includes processing their own feelings about providing end-of-life care, taking time to disconnect from the workplace grief, and prioritising self-care activities, such as exercise and journaling.
      • White D.
      • Meeker M.
      Guiding the process of dying: the personal impact on nurses.
      Seeking support from colleagues, reflecting, and participating in debriefing activities are recommended.
      • Malloy P.
      • Thrane S.
      • Winston T.
      • Virani R.
      • Kelly K.
      Do nurses who care for patients in palliative and end-of-life settings perform good self-care?.
      ,
      • White D.
      • Meeker M.
      Guiding the process of dying: the personal impact on nurses.
      Almost 90% of critical care nurses in Australia and New Zealand have access to formal debriefing opportunities after a death;
      • Mitchell M.
      • Coombs M.
      • Wetzig K.
      The provision of family-centred intensive care bereavement support in Australia and New Zealand: Results of a cross sectional explorative descriptive survey.
      however, this should be in addition to nurse leaders providing immediate support, responding to concerns for nurses, and ensuring that the time-intensive nature of providing end-of-life care is considered in unit workload allocation.
      • White D.
      • Meeker M.
      Guiding the process of dying: the personal impact on nurses.

      5. Practice recommendations

      The ACCCN endorse the following 28 end-of-life care practice recommendations aimed at ensuring optimal end-of-life care in critical care and in accordance with local unit practice and resources, staffing, and patient profiles.
      To ensure family-centred care at the end of life, the nurse should
      • 1.
        Undertake and document an assessment of patient and/or family needs and preferences including
        • Ensuring key members of the patient's family, their relationship to the patient, and contact details are documented
          • Bloomer M.
          • Endacott R.
          • Ranse K.
          • Coombs M.
          Navigating communication with families during withdrawal of life-sustaining treatment in intensive care: a qualitative descriptive study in Australia and New Zealand.
        • Cultural preferences including cultural and religious beliefs and customs
          • Brooks L.A.
          • Bloomer M.J.
          • Manias E.
          Culturally sensitive communication at the end-of-life in the intensive care unit: a systematic review.
          ,
          • Bloomer M.J.
          • Al-Mutair A.
          Ensuring cultural sensitivity for Muslim patients in the Australian ICU: considerations for care.
        • The need for social work or other support services to address additional family needs including those that may extend beyond the critical care unit, for example, family accommodation
        • Location of death e.g. remain in unit, transfer to hospice, ward, home,
          • Coombs M.A.
          • Darlington A.-S.E.
          • Long-Sutehall T.
          • Pattison N.
          • Richardson A.
          Transferring patients home to die: what is the potential population in UK critical care units?.
          or on country
          • O'Brien A.P.
          • Bloomer M.J.
          • McGrath P.
          • Clarke K.
          • Martin T.
          • Lock M.
          • et al.
          Considering Aboriginal palliative care models: the challenges for mainstream services.
      • 2.
        Orientate family to the critical care unit environment, available facilities, and contact information
        • Coombs M.
        • Mitchell M.
        • James S.
        • Wetzig K.
        Intensive care bereavement practices across New Zealand and Australian intensive care units: a qualitative content analysis.
      • 3.
        Seek family interest in and permission to involve religious/spiritual/cultural leaders for ongoing family support
        • Northam H.L.
        • Hercelinskyj G.
        • Grealish L.
        • Mak A.S.
        Developing graduate student competency in providing culturally sensitive end of life care in critical care environments - a pilot study of a teaching innovation.
      • 4.
        Seek family interest in the collection and provision of mementos throughout the critical care admission and after death
        • Beiermann M.
        • Kalowes P.
        • Dyo M.
        • Mondor A.
        Family members' and intensive care unit nurses' response to the ECG Memento© during the bereavement period.
        ,
        • Johansson M.
        • Wåhlin I.
        • Magnusson L.
        • Runeson I.
        • Hanson E.
        Family members' experiences with intensive care unit diaries when the patient does not survive.
        ,
        • Neville T.H.
        • Clarke F.
        • Takaoka A.
        • Sadik M.
        • Vanstone M.
        • Phung P.
        • et al.
        Keepsakes at the end of life.
      • 5.
        Facilitate privacy and space for the patient and/or family by offering to relocate the dying patient to a single room or larger bed space, where available
        • Brooks L.A.
        • Manias E.
        • Nicholson P.
        Communication and decision-making about end-of-life care in the intensive care unit.
      • 6.
        Support and facilitate the visit of children by working with parents to
        • Prepare children for what they might see, hear, feel, and smell
          • Clarke C.
          • Harrison D.
          The needs of children visiting on adult intensive care units: a review of the literature and recommendations for practice.
          ,
          • Knutsson S.E.
          • Otterberg C.L.
          • Bergbom I.L.
          Visits of children to patients being cared for in adult ICUs: policies, guidelines and recommendations.
        • Encourage and support children to ask questions, with information given in a sensitive and age-appropriate way
          • Clarke C.
          • Harrison D.
          The needs of children visiting on adult intensive care units: a review of the literature and recommendations for practice.
          ,
          • Knutsson S.E.
          • Otterberg C.L.
          • Bergbom I.L.
          Visits of children to patients being cared for in adult ICUs: policies, guidelines and recommendations.
      To ensure optimal communication and decision-making, the nurse should
      To ensure patient comfort and family support, the nurse should
      • 10.
        Seek clear instruction to guide the process for withdrawal and withholding of life-sustaining treatment including
        • Reducing and/or ceasing life-sustaining drugs and treatment modalities (e.g., continuous renal replacement therapy)
        • Weaning ventilation, extubation,
          • Long-Sutehall T.
          • Willis H.
          • Palmer R.
          • Ugboma D.
          • Addington-Hall J.
          • Coombs M.
          Negotiated dying: a grounded theory of how nurses shape withdrawal of treatment in hospital critical care units.
          and oxygen therapy
          • Stokes H.
          • Vanderspank-Wright B.
          • Bourbonnais F.F.
          • Wright D.K.
          Meaningful experiences and end-of-life care in the intensive care unit: a qualitative study.
        • Use of sedation, analgesics, anticonvulsant, and/or antimuscarinic drugs
          • Vanderspank-Wright B.
          • Fothergill-Bourbonnais F.
          • Malone-Tucker S.
          • Slivar S.
          Learning end-of-life care in ICU: strategies for nurses new to ICU.
          ,
          • Stokes H.
          • Vanderspank-Wright B.
          • Bourbonnais F.F.
          • Wright D.K.
          Meaningful experiences and end-of-life care in the intensive care unit: a qualitative study.
          ,
          • Epker J.L.
          • Bakker J.
          • Lingsma H.F.
          • Kompanje E.J.
          An observational study on a protocol for withdrawal of life-sustaining measures on two non-academic intensive care units in The Netherlands: few signs of distress, no suffering?.
      • 11.
        Remove any unnecessary equipment and monitoring from the patient bedside, rationalising lines and equipment attached to the patient
        • Vanderspank-Wright B.
        • Fothergill-Bourbonnais F.
        • Malone-Tucker S.
        • Slivar S.
        Learning end-of-life care in ICU: strategies for nurses new to ICU.
        ,
        • Stokes H.
        • Vanderspank-Wright B.
        • Bourbonnais F.F.
        • Wright D.K.
        Meaningful experiences and end-of-life care in the intensive care unit: a qualitative study.
      • 12.
        Seek a review of the patient's medication regimen, with a priority on pharmacological strategies that assist relief of symptoms and distress, such as the use of analgesia and sedation
        • Vanderspank-Wright B.
        • Fothergill-Bourbonnais F.
        • Malone-Tucker S.
        • Slivar S.
        Learning end-of-life care in ICU: strategies for nurses new to ICU.
        ,
        • Stokes H.
        • Vanderspank-Wright B.
        • Bourbonnais F.F.
        • Wright D.K.
        Meaningful experiences and end-of-life care in the intensive care unit: a qualitative study.
        ,
        • Epker J.L.
        • Bakker J.
        • Lingsma H.F.
        • Kompanje E.J.
        An observational study on a protocol for withdrawal of life-sustaining measures on two non-academic intensive care units in The Netherlands: few signs of distress, no suffering?.
      • 13.
        Monitor and assess the patient for signs of discomfort, including but not limited to pain, anxiety, dyspnoea, restlessness, and psychological distress
        • Su A.
        • Lief L.
        • Berlin D.
        • Cooper Z.
        • Ouyang D.
        • Holmes J.
        • et al.
        Beyond pain: nurses' assessment of patient suffering, dignity, and dying in the intensive care unit.
      • 14.
        Continue regular repositioning and hygiene
        • Vanderspank-Wright B.
        • Fothergill-Bourbonnais F.
        • Malone-Tucker S.
        • Slivar S.
        Learning end-of-life care in ICU: strategies for nurses new to ICU.
        ,
        • Stokes H.
        • Vanderspank-Wright B.
        • Bourbonnais F.F.
        • Wright D.K.
        Meaningful experiences and end-of-life care in the intensive care unit: a qualitative study.
      • 15.
        Ascertain family preferences for the timing of withdrawal of treatment and communicate this to the treating team
        • Long-Sutehall T.
        • Willis H.
        • Palmer R.
        • Ugboma D.
        • Addington-Hall J.
        • Coombs M.
        Negotiated dying: a grounded theory of how nurses shape withdrawal of treatment in hospital critical care units.
      • 16.
        Determine whether family would like to be present for withdrawal of treatment and before and after death
        • Long-Sutehall T.
        • Willis H.
        • Palmer R.
        • Ugboma D.
        • Addington-Hall J.
        • Coombs M.
        Negotiated dying: a grounded theory of how nurses shape withdrawal of treatment in hospital critical care units.
      • 17.
        Prepare and guide family for what they will see, hear, and experience as death approaches
        • Wiegand D.L.
        • Cheon J.
        • Netzer G.
        Seeing the patient and family through: nurses and physicians experiences with withdrawal of life-sustaining therapy in the ICU.
        ,
        • Kirchhoff K.T.
        • Conradt K.L.
        • Anumandla P.R.
        ICU nurses' preparation of families for death of patients following withdrawal of ventilator support.
      In considering possible organ donation, the nurse should
      To ensure optimal care after death, the nurse should
      To ensure optimal self-care, nurses should

      6. Discussion

      In the development of this Position Statement, it was evident that several key areas that might be considered core to research and end-of-life care practice recommendations were absent or underrepresented in the evidence. Whilst advance care planning is promoted,
      Australian Commission on Safety and Quality in Health Care
      National consensus statement: essential elements for safe and high quality end-of-life care.
      some studies have reported on their prevalence in critical care settings,
      • Bloomer M.
      • Hutchinson A.
      • Botti M.
      End-of-life care in hospital: an audit of care against Australian national guidelines.
      ,
      • King A.
      • Botti M.
      • McKenzie D.
      • Barrett J.
      • Bloomer M.
      End-of-life care and intensive care unit clinician involvment in a private acute care hospital: a retrospective descriptive medical record audit.
      but the relevance and meaningfulness of advance care planning in guiding end-of-life care decision-making in critical care is not widely reported or understood. Similarly, whilst nurse coping self-care and wellbeing after patient death is acknowledged as important across practice settings,
      • Zheng R.
      • Lee S.F.
      • Bloomer M.J.
      How nurses cope with patient death: a systematic review and qualitative meta-synthesis.
      evidence specifically pertaining to Australasian nurses in critical care nurses practice settings is sparse.

      7. Conclusion

      The purpose of this Position Statement was to provide specific evidence-based practice recommendations for critical care nurses to support the facilitation of high-quality end-of-life care. The review of the literature, used to inform this Position Statement, coupled with the contribution of clinical experts and ACCCN board members, has resulted in 28 practice recommendations that are evidence-based and also feasible and meaningful for critical care clinicians across Australia.

      CRediT authorship contribution statement

      Melissa Bloomer: Conceptualisation, Methodology, Writing – Original Draft, Review and Editing, Supervision, Project Administration; Kristen Ranse: Conceptualisation, Methodology, Formal Analysis, Writing – Original Draft, Review and Editing; Ashleigh Butler: Conceptualisation, Methodology, Writing – Original Draft, Review and Editing; Laura Brooks: Conceptualisation, Methodology, Writing – Original Draft, Review and Editing

      Acknowledgements

      The authors would like to thank ACCCN board members, Georgina Neville and Dr Ylona Chun Tie. The authors would also like to thank ACCCN members who participated as clinician experts, Leah Adams, Elizabeth Allen, Gemma Casement, Benjamin Coutts, Sophie Gong, Amanda Logie-Smith, Jacob Moir, Priscilla Pather, Ruth Portingale, and Dr Agness Chisanga Tembo.

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