The critical care nurse’s role in EOL

LITERATURE REVIEW

The critical care nurse’s rolein End-of-Life care: issuesand challengesNikolaos Efstathiou and Collette Clifford

ABSTRACTAim: The purpose of this article is to discuss the challenges critical care nurses face when looking after patients needing End-of-Life (EoL) carein critical care environments.Background: Critical care nurses frequently provide care to patients who fail to respond to treatments offered to support and prolong life.The dying phase for individuals in critical care settings, commonly after withholding/withdrawing treatment, is very short posing great demandson critical care nurses to provide physical and emotional support to both patients and their families. Despite the existence of recognized careplanning frameworks that may help nurses in providing EoL care, these are not used by all units and many nurses rely on experience toinform practice. A number of aspects such as communication, patient/family-centred decision-making, continuity of care, emotional/spiritualsupport and support for health professionals have been indicated as contributing factors towards the provision of effective EoL care. These areconsidered from the perspective of critical care nursing.Conclusion: Skills development in key aspects of care provision may improve the provision of EoL care for critical care patients and theirfamilies.Relevance to clinical practice: Critical care nurses have an essential role in the provision of effective EoL care; however, this dimensionof their role needs further exploration. It is noted that educational opportunities need to be provided for critical care nurses to increase theknowledge on planning and delivering EoL care. To inform this evaluation of current EoL care provision in critical care is necessary to address aknowledge deficit of the needs of nurses who seek to support patients and their families at a critical time.

Key words: Care professionals • Critical care nursing • Family care in critical care • Withholding/withdrawing treatment

INTRODUCTIONSeriously ill patients are admitted to critical careunits to take advantage of advanced technology andintensive nursing care with a primary emphasis onrecovery and surviving. An admission to critical carecreates a crisis to both patients and families as inmost cases there is no previous severe condition tosuggest the need for such an admission (Stayt, 2007;ICNARC, 2010). Despite advances in technology and

Authors: N Efstathiou, PGCEd, PhD, MSc, BSc Nursing, Lecturer,University of Birmingham, College of Medical and Dental Sciences, Schoolof Health and Population Sciences, Nursing and Physiotherapy,Birmingham, UK and C Clifford, PhD, MSc, Dip N, RN, RNT, Professor ofNursing, University of Birmingham, College of Medical and DentalSciences, School of Health and Population Sciences, Nursing andPhysiotherapy, Birmingham, UKAddress for correspondence: N Efstathiou, PGCEd, PhD, MSc, BScNursing, Lecturer, University of Birmingham, College of Medical and DentalSciences, School of Health and Population Sciences, Nursing andPhysiotherapy, 52 Pritchatts Road, Edgbaston, Birmingham B15 2TT, UKE-mail: [email protected]

medicine that support and prolong life, many patientsdeteriorate and fail to survive. As a result, in additionto the initial crisis leading to admission to criticalcare, health care professionals and the families haveto deal with the management and negotiation of deathwhich is regarded as highly stressful and emotionallydistressing (Stayt, 2009). Mortality rates in adult criticalcare units stand at approximately 17% (ICNARC, 2010),thus care of the dying patient is an important andfrequent part of critical care. The purpose of this articleis to raise some of the key issues that may impact on thequality of such care and stimulate discussion about thechallenges critical care nurses face when they provideEnd-of-Life (EoL) care.

Recent reports demonstrate dissatisfaction with thecare surrounding patients’ death in the National HealthSystem (Healthcare Commission, 2007; Department ofHealth, 2008), implying that the care of the dyingpatients and their families in hospitals may be apoor experience. Given that a high percentage ofthese deaths happen in critical care, factors that may

116 © 2011 The Authors. Nursing in Critical Care © 2011 British Association of Critical Care Nurses • Vol 16 No 3

Nurse’s role in End-of-Life care

contribute to dissatisfaction with the management ofthe death in critical care such as unnecessary suffering,pain and lack of communication need to be considered(Clarke et al., 2003).

Unnecessary suffering and ineffective communica-tion at the end of life in critical care is frequentlyattributed to the difficulty of identifying the perfecttiming to shift from cure to comfort orientated care. Inaddition, the provision of EoL care in critical care isfurther complicated because of the short duration ofthe dying phase. Most deaths in critical care occur afterwithdrawal of treatment, creating a short dying phaseof usually up to 4 h (Hall and Rocker, 2000; Wunschet al., 2005). The risk of sudden imminent death doesnot allow for ‘preparation for death’ prompted in idealpalliative care and it places enormous demands onthe nurses who are expected to provide high-qualitypalliative care for both the dying and the bereaved insuch a short time (Neuberger, 2003; Morgan, 2008).Health professionals frequently express discomfortabout speaking with families and a dying patient aboutdeath (Lloyd-Williams et al., 2009). Critical care nursesspecifically tend to distance themselves from familiesand dying patients by engaging in practical tasks andavoiding discussing sensitive issues (Shorter and Stayt,2010). In addition, the provision of effective EoL carecan be further compromised because of a lack of essen-tial palliative care skills and staff shortages withincritical care units (Costello, 2006).

Current critical care policy does not explicitly sup-port non-technical, non-beneficial or palliative carewithin critical care (Pattison, 2006; Morgan, 2008), leav-ing critical care nurses without clear guidance on thecare of dying patients. However, the Department ofHealth (2008) has placed great emphasis on the EoLagenda and the NHS EoL care programme, initiallydirected at the primary care, is gradually transferringto secondary care. In the UK, the specific ways in whichcritical care nurses contribute to EoL care remain poorlydefined and described. Despite this lack of research incritical care EoL in UK, there is a wealth of literature inNorth America that has led to the development of sevendomains and associated quality indicators for EoL carein critical care (Table 1). Clarke et al. (2003) developedthe domains and associated quality indicators througha consensus process that aimed to encapsulate all thevariables that could provide measurements for deter-mining the quality of EoL care. It is expected that usingthese quality indicators to inform care giving and eval-uation, critical care nurses will be able to provide betterquality EoL care.

In order to analyse the challenges critical care nursesface when caring for dying critically ill patients andidentify good practices or areas requiring further

Table 1 The quality domains for End-of-Life (EoL) care in critical care

Quality domains

1 Communication2 Patient and family-centred decision-making3 Continuity of care4 Emotional and practical support5 Symptom management and comfort care6 Spiritual support7 Emotional and organizational support for critical care clinicians

Source: Clarke et al. (2003).

research, Clarke et al.’s (2003) domains were used as aframework to structure the discussion in this analysispaper. The seven domains provided also keywords toidentify the most relevant and updated evidence ondatabases such as CINAHL and MEDLINE. A breadthof literature was identified relevant to each domain,thus we do not claim to have exhausted all the availableevidence as it would happen on a systematic literaturereview (Cronin et al., 2008). Every effort was made touse the most updated information to raise and discussthe issues and challenges critical care nurses face whenthey provide EoL care, however, we did not excludehighly regarded older publications.

CommunicationThe Department of Health (2003) regards communica-tion as an essential skill for health care professionalsin order to be able to provide high-quality, effectiveand compassionate care to dying patients and theirfamilies. Lautrette et al. (2007) suggest that effectivecommunication in critical care can improve outcomes,especially for the bereaved family. Although nursesworking in critical care consider communication withdying patients and their relatives an effective therapeu-tic resource, they also view themselves ill-prepared forthe task (Trovo De Araujo and Paes Da Silva, 2004).McCaughan and Parahoo’s (2000) study revealed thatcommunication occupies a high place among the areasdemanding greater knowledge by nurses in the careof dying patients. The lack of communication skills inthis particular aspect of care has led practitioners inmany cases missing opportunities to facilitate familyinteractions (Curtis et al., 2005).

As family satisfaction and ratings of the quality ofpalliative and EoL care are linked with good commu-nication, a shared decision model is advised as appro-priate to improve communication, with collaborationbetween physicians and nurses and ultimately betweenhealth care professionals and the patient/family. Col-laboration would facilitate a patient and family-centreddecision-making approach (Latour et al., 2009). Other

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interventions that may help improving communica-tion could include brochures and allowing more timefor family members to talk. Lautrette et al.’s (2007) ran-domized control trial found that the provision of abrochure on bereavement and providing more time forfamily members to talk can improve communicationand reduce the burden of bereavement for families.However, the trial was conducted in France wherethe authors acknowledge that paternalism is more evi-dent in the patient-physician relationship, thus similarstudies should be contacted in UK to identify theeffectiveness of such interventions.

Patient and family-centred decision-makingIn the context of EoL care in critical care, decision-making in most cases refers to treatment withholdingor withdrawal (Lautrette et al., 2006). Although thecompetent patient has a right to choose, after provisionof full information, whether to undergo any aspectof treatment that is offered, critically ill patients arecommonly unable to think and participate in decisions,as they may be unconscious, sedated, intubated andventilated (Bailly et al., 2003; Bell, 2007). Therefore,much of the discussion about what is happening tothe patient and decisions about treatment take placebetween the patient’s family and the critical carephysicians and nurses.

Under UK law, the ultimate authority for medicalcare of the incompetent adult rests with the treatingphysicians rather than the next-of-kin, nurses or thecourts (Bell, 2007). Although the legislation seems toadopt a paternalistic approach, the physicians have toact in the ‘best interests’ of the patient, which includebest medical interests, the patients’ wishes and beliefswhen competent, their general well-being and theirspiritual and religious welfare (Department of Health,2001). The critical care nurse’s role in decision-makingis not well defined. Coombs and Long (2008) reportthat nurses’ views on withholding or withdrawinglife-supporting treatment may not always be elicited,despite spending more direct time with the patientsand their families. On the other hand, Latour et al.’s(2009) European study demonstrates that the majorityof critical care nurses are involved ‘actively’ in thedecision-making process to withhold or withdraw life-supporting treatment. However, the nature of this‘active involvement’ is not clarified in their study,adding little new evidence on the nurse’s role indecision-making. Regardless of how actively criticalcare nurses participate in decision-making to withholdor withdraw life-supporting treatment, it is importantthat they promote patient and family-centred decision-making, as this approach sees patients embeddedwithin a social structure and web of relationships

and is seen as a comprehensive ideal for EoL carein critical care (Truog et al., 2008). Recently, attentionhas also been drawn to promoting patient and family-centred decision-making with non-English-speakingpatients and families. Thornton et al. (2009) suggest thatnon-English-speaking members may be at increasedrisk of receiving less information about their patient’scritical illness from health care professionals becauseof the language and cultural barriers. Given this, futurestudies should consider ways to promote patient andfamily-centred decision-making from a multi-culturalperspective with families of critically ill patients.

Continuity of careThe organization of critical care services creates severalchallenges in the care of dying patients. The rapidturnover of staff, resulting in a great number of staffcaring for a single patient, creates the potential fordiscontinuity of care and conflicting goals of careamong the health care professionals (Danis et al., 1999).The family may also hear various and divergentinformation and opinions, both formal and informal,regarding the patient’s condition from numeroushealth care professionals, creating further confusionand raising obstacles for providing effective EoL care(Beckstrand and Kirchhoff, 2005).

As the health care professionals spending most timewith patients and their families, critical care nurses mayfeel anxiety when they have to face the challenge ofbringing varied perspectives together and identifyinga plan of care that each party believes would accommo-date the patient’s needs. Puntillo and McAdam (2006)suggest that multi-professional discussions have totake place to allow reflection about the aims of careand explorations to what EoL care means to differenthealth professionals. An aid for efficient continuity ofcare at the end of life could be the use of an establishedand evidence-based care plan such as the LiverpoolCare Pathway (LCP) which is an integrated care path-way for the dying. The LCP for critical care aims toimprove care of the dying in the last hours/days of lifeby providing clear goals in the management of physi-cal, psycho-social and spiritual symptoms (Ellershaw,2007). By facilitating comprehensive documentation ofsymptoms, care provided and problems during thedying process, the LCP contributes to structuring careand proactively managing the comfort of the patient(Veerbeek et al., 2008).

Emotional and practical support for patientsand relativesAs the majority of dying critically ill patients is not ableto communicate, emotional and practical support hasbeen mainly focussed on the patients’ family. Studies

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have shown high levels of anxiety and depressionamong family members of critically ill patients becauseof the absence of regular health care professionals-family discussions and the lack of a private spacefor family meetings (Pochard et al., 2001). In addition,Simpson (1997) found that the critical care environmentseparates dying patients from their families withtechnological barriers such as machines, tubes andwires, and the constant sound of alarms going off,creating further anxiety.

Bach et al. (2009) suggest that one of the most fun-damental roles nurses play in providing emotionalsupport to families of critically ill patients is beingpresent at the bedside, providing comfort, a car-ing touch and a listening ear. Ciccarello (2003) alsodescribes nursing presence within EoL care as a simplebut powerful intervention. Fridh et al. (2009) suggestthat nurses should attempt to overcome the dehuman-izing aspects of dying in a technological environmentby ‘reconnecting’ the patients with their family. Thestrategy advised to achieve this is the development oftrust between nurses, doctors and the patient’s fam-ily, by accepting the inevitability of death (Simpson,1997). Although further interventions are suggestedby Simpson (1997) for reconnecting the family and thepatient such as therapeutic manipulation, environmen-tal manipulation and emotional support for the family,the author does not provide clear advice on how thesecan be achieved. Further research is required to explorethe concept of presence and how to reconnect patientsduring their last stages of life and their families in thehighly technological environment of critical care.

Symptom management and comfort careAccording to Puntillo et al. (2004), pain is one of themost prevalent symptoms in critical care as it is usu-ally associated with procedures such as suctioning,turning, wound care and the presence of endotrachealtubes – procedures that patients dying in critical careare subjected to as nurses aim to keep them com-fortable. The management of pain in dying criticallyill patients may pose difficulties as the common painassessment tools may be of little value in assessing thesemi-conscious patient’s pain (Cosgrove et al., 2006).However, the use of behavioural pain assessmenttools based on physiologic variables and behaviouralobservations, such as the Behavioral Pain Scale (Payehet al., 2001) or the Critical-Care Pain Observation Tool(Gelinas et al., 2006), may assist critical care nursesin objectively assessing dying patients’ pain. For therelief of pain, discomfort, anxiety and distress opioidsand sedatives are commonly used. A Delphi studyof critical care experts conducted in Canada (Hawry-luck et al., 2002) concluded that the use of analgesia

and sedatives for dying critical care patients shouldbe individualized, suggesting also that there shouldnot be a maximum dose because of the individualresponse to analgesia and sedation. However, Toscaniet al. (2003) caution that suffering can have a profoundredemptive meaning for some patients, emphasizingfurther the importance of individualized approachesin the management of pain, anxiety and distress.

Other common symptoms for dying patients incritical care apart from pain include respiratory dis-tress, nausea and increased respiratory tract secretions(Nelson et al., 2001; Cosgrove et al., 2006; Solano et al.,2006). Extensive literature exists with regards the phar-macological management of distressing symptomsand comfort care to guide health care professionals(Toscani et al., 2003; Cosgrove et al., 2006; Hugel et al.,2006; Truog et al., 2008). Despite the existence of awide pharmacological range for the relief of symp-toms at the end of life, critical care nurses are facedwith limitations, such as prescribing and consequentlydelivering medication timely. Non-pharmacologicalinterventions used within palliative care to relievesymptoms and provide comfort, such as massage ther-apy and music therapy (Demmer, 2004), could possiblybe used in the care of dying patients in critical care. Asystematic review (Bradt and Dileo, 2010) has shownthat the evidence with regards the effectiveness ofmusic therapy at relieving symptoms at the end of lifeis inconclusive; however, therapeutic massage has beenfound to provide pain relief in a randomized controltrial of advanced cancer patients receiving palliativecare (Kutner et al., 2008).

Spiritual supportAccording to Carr (2008), at the core of a dying person’sand family’s experience there is often an overpoweringsense of personal loss, with associated spiritual suffer-ing that requires appropriate nursing intervention incritical care. Kruse et al. (2007), after studying spiritu-ality and coping at the end of life, have concluded thatspirituality is an essential element in creating a peace-ful death. As the acknowledgement of the patient’s andfamilies’ spiritual needs in end of life is associated withgreater satisfaction (Gries et al., 2008) and a peacefuldeath (Kruse et al., 2007), it is suggested that health careprofessionals should routinely ask patients and fami-lies whether spiritual needs are being met and, if not,how the hospital’s resources might be more helpful(Faber-Langendoen and Lanken, 2000). Timmins andKelly (2008) advise the use of simple assessment toolsthat will facilitate the gathering of objective informa-tion to help in providing holistic critical care. However,as spirituality lacks clear definition, critical care nursesmay feel anxiety with regards the most effective means



of addressing the spiritual needs of patients and fam-ilies. Burkhart and Hogan (2008) have identified theneed for further research to explore initially what tech-niques accurately recognize spiritual needs and whatinterventions may promote spiritual well-being.

Emotional and organizational supportfor cliniciansCalvin et al. (2007) reveal that critical care nursesregard the provision of EoL care to dying patients asa privilege. However, the provision of care to patientswho are not likely to recover is usually associated withmoderated levels of moral distress which can leadto emotional exhaustion (Meltzer and Huckabay, 2004;Elpren et al., 2005). Delays in decision-making may alsoresult in unnecessary suffering for the patient and thefamily, creating more disappointment to nurses (Hovet al., 2007). Furthermore, after a patient dies, nursesmay grieve and if the grief is concealed or suppressedit may lead to further stress (Brosche, 2003; Calvinet al., 2009). It is suggested by Rushton (1992) that theunrecognized health care professionals’ suffering andgrief may also undermine the effectiveness and qualityof care offered.

Truog et al. (2008) acknowledge that health care pro-fessionals have important bereavement needs. Strate-gies to support critical care nurses as they provideterminal care have to be considered by all critical careunits. Cosgrove et al. (2006) suggest formal or informalbriefings as a strategy to cope with EoL situations. Thebriefings could take the format of clinical supervisionwhich is regarded as an effective way to provide peersupport and stress relief for nurses (Brunero and Stein-Parbury, 2008). In addition, Ellershaw (2010) advisesmandatory training and education with courses tai-lored to the health care professional’s needs and thedevelopment of specialist palliative care teams in everyacute hospital as another form of organizational sup-port for nurses. As a result of the range and largenumber of individuals involved in the delivery of EoLcare, innovative models of education are advised, suchas e-learning for reaching a large workforce (Depart-ment of Health, 2008).

DISCUSSION AND CONCLUSIONIn critical care units, the usually short phase ofpatients’ dying pose great demands on nurses cre-ating challenges in providing effective EoL care topatients and their families. Arising from the anal-ysis of the literature, the areas of communication,continuity of care, education and integration of pal-liative care principles in critical care appear to requireimmediate attention. For effective and compassionate

provision of EoL care, nurses need to promote patientand family-centred decision-making through effectivecommunication with all involved in the patient’s care.It is acknowledged that provision of clear informationin a variety of forms to the dying patient’s family willhelp. This will be enhanced by the availability of healthprofessionals for the discussions needed to improve theprovision of effective EoL care.

Linked with this, critical care nurses should considerhow care plans help ensure continuity on the deliveryof appropriate care for people who are in the dyingphase of their illness and after death. One of the frame-works the Department of Health (2008) has identifiedas effective in planning EoL care is the LCP. The indi-cations are that the critical care specific LCP (LCP-ICU)provides an evidence-based multi-disciplinary resolu-tion to most of the domains discussed in this article,including continuity of care, symptom management,spirituality and communication (Morgan, 2008). How-ever, a number of reports suggest that education andadequate support are essential for the successful imple-mentation of the LCP-ICU (Walker and Read, 2010) andthat the length of the LCP-ICU document may not suitthe speed of death in critical care (Morgan, 2010). It isevident that in order to implement such care pathwayssuccessfully, training of health and social care profes-sionals is required. Furthermore, the extent to whichthis tool applies to the critical care units needs furtherconsideration and evaluation.

Overall, good knowledge of palliative care principlesis required to relieve physical, emotional and spiritualdistressing symptoms for both patients and their rela-tives. Although EoL care has been integrated into pre-registration nursing education, there are still concernsthat students are not adequately prepared to provideterminal care (Dickinson et al., 2008). Until recentlyEoL was not considered as a component of educationfor critical care nurses with much of the attention inrole development being given to life-sustaining caregiving in formal education programmes (Walker, 2001;EfCCNa, 2004). More recently Coombs and Long (2008)have highlighted the need to enhance the education ofthe existing workforce, targeting especially novice crit-ical care nurses, in order to develop good EoL care inpractice. This reflects the Department of Health (2008)priority action to improve the skills of people work-ing with dying people and their families. Appreciatingthe challenges of time, they suggest a key elementis establishing online courses for health care profes-sionals which enable flexible learning to occur. Fromthis, perspective critical care nurses may find useful thee-ELCA (End of Life Care for All), a course focussing onthe core elements of EoL care (www.e-lfh.org.uk, 2009).Although such courses will fill an educational gap,



there is a need to evaluate the impact and effectivenessof such programmes in supporting care delivery incritical care practice.

In response to identified need, there is a desire tointegrate the good principles of palliative care intocritical care. However, much work needs to be carriedout to determine the optimal ways of doing this in anenvironment where it is acknowledged that what iscommonly recognized as good practice in caring forthe dying does not lend itself to situations in which

the dying phase is radically curtailed. The principles ofgood EoL care indicated above need to be adapted toprovide the best care for those who are unfortunate todie as a result of acute life-threatening situations in acritical care environment and their families and lovedones left behind. To support these developments thecritical care nurse’s role in providing EoL care needs tobe explored further. The domains outlined here couldhelp structure and inform the development of futureresearch studies.

WHAT IS KNOWN ABOUT THIS TOPIC

• A considerable time of critical care nurses’ work consists of caring for dying patients and their families.• The dying phase of patients in critical care, usually after withholding or withdrawing treatment, is very short.• There are high demands on critical care nurses to provide effective and compassionate EoL care within a short time.• Little guidance exists with regards how best critical care nurses can fulfil their role in providing EoL care.

WHAT THIS PAPER ADDS

• This paper raises key issues in the context of EoL care in critical care.• Aspects of EoL care in critical care such as communication, patient and family-centred decision-making, continuity of care, emotional and

practical support for relatives, symptom management and spiritual support for patients and emotional and organizational support forcritical care clinicians have provided a starting point to identify knowledge gaps and areas for further research in the pursuit of effectiveEoL care in critical care.

REFERENCESBach V, Ploeg J, Black M. (2009). Nursing roles in end-of-life

decision making in critical care settings. Western Journal ofNursing Research; 31: 496–512.

Bailly N, Perrier M, Bougle MF, Colombat CP. (2003). The rela-tionship between palliative and intensive care. EuropeanJournal of Palliative Care; 10: 199–201.

Beckstrand RL, Kirchhoff KT. (2005). Providing end-of-life careto patients: critical care nurses’ perceived obstacles andsupportive behaviours. American Journal of Critical Care;14: 395.

Bell D. (2007). The legal framework for end of life care: a UKperspective. Intensive Care Medicine; 33: 158–162.

Bradt J, Dileo C. (2010). Music Therapy for End-of-Life Care.Cochrane Database of Systematic Reviews, issue 1, art. no.CD007169.

Brosche TA. (2003). Death, dying, and the ICU nurse. Dimensionsin Critical Care Nursing; 22: 173–179.

Brunero S, Stein-Parbury J. (2008). The effectiveness of clinicalsupervision in nursing: an evidence based literature review.Australian Journal of Advanced Nursing; 25: 86–94.

Burkhart L, Hogan N. (2008). An experiential theory of spiritualcare in nursing practice. Qualitative Health Research; 18:928–938.

Calvin AO, Kite-Powell DM, Hickey JV. (2007). The neuroscienceICU nurse’s perceptions about end of life care. Journal ofNeuroscience Nursing; 39: 143–150.

Calvin AO, Lindy CM, Clingon SL. (2009). The cardiovascularintensive care unit nurse’s experience with end-of-life care:a qualitative descriptive study. Intensive and Critical CareNursing; 25: 214–220.

Carr T. (2008). Mapping the processes and qualities of spiritualnursing care. Qualitative Health Research; 18: 686–700.

Ciccarello GP. (2003). Strategies to improve end-of-life care in theintensive care unit. Dimensions of Critical Care Nursing; 22:216–222.

Clarke EB, Curtis JR, Luce JM, Levy M, Danis M, Nelson J,Solomon MZ. (2003). Quality indicators for end-of-life carein the intensive care unit. Critical Care Medicine; 31: 2255–2262.

Coombs M, Long T. (2008). Managing a good death in critical care:can health policy help? Nursing in Critical Care; 13: 208–214.

Cosgrove JF, Nesbitt ID, Bartley C. (2006). Palliative care on theintensive care unit. Current Anaesthesia & Critical Care; 17:283–288.

Costello J. (2006). Dying well: nurses’ experiences of ‘good andbad’ deaths in hospital. Journal of Advanced Nursing; 54:594–601.

Cronin P, Ryan F, Coughlan M. (2008). Undertaking a literaturereview: a step-by-step approach. British Journal of Nursing; 17:38–43.

Curtis JR, Engelberg RA, Wenrich MD, Shannon SE, Treece PD,Rubenfeld GD. (2005). Missed opportunities during familyconferences about end-of-life care in the intensive care unit.American Journal of Respiratory Critical Care Medicine; 171:844–849.

Danis M, Fereman D, Fins JJ, Fox E, Kastenbaum B, Lanken P,Long K, Lowenstein E, Lynn J, Rouse F, Tulsky J. (1999). Incor-porating palliative care into critical care education: princi-ples, challenges, and opportunities. Critical Care Medicine; 27:2005–2013.

Demmer C. (2004). A survey of complementary therapy servicesprovided by hospices. Journal of Palliative Medicine; 7: 510–516.

Department of Health. (2001). Good Practice in Consent. HSC2001/023. London: Department of Health.

Department of Health. (2003). Building on the Best: Choice, Respon-siveness and Equity in the NHS. London: Department of Health.



Department of Health. (2008). End of Life Care Strategy – PromotingHigh Quality Care for All Adults at the End of Life. London:Department of Health.

Dickinson GE, Clark D, Sque M. (2008). Palliative care and endof life issues in UK preregistration, undergraduate nursingprogrammes. Nurse Education Today; 28: 163–170.

EfCCNa. (2004). Position statement on post-registration criticalcare nursing education within Europe. European federation ofCritical Care Nursing associations. http://www.efccna.org/downloads/Position%20statement%20on%20education%20EfCCNa.pdf (accessed 01/05/10).

Ellershaw JE. (2007). Editorial: care of the dying: what a differencean LCP makes. Palliative Medicine; 21: 365–386.

Ellershaw JE. (2010). Driving improvement in hospital. In:Addicott R, Ashton R, (eds), Delivering Better Care at End ofLife. London: King’s Fund.

Elpren EH, Covert B, Kleinpell R. (2005). Moral distress of staffnurses in medical intensive care unit. American Journal ofCritical Care; 14: 523–530.

Faber-Langendoen K, Lanken PN. (2000). Dying patients in theIntensive Care Unit: forgoing treatment, maintaining care.Annals of Internal Medicine; 133: 886–893.

Fridh I, Forsberg A, Bergdom I. (2009). Doing one’s utmost:nurses’ descriptions of caring for dying patients in an inten-sive care environment. Intensive and Critical Care Nursing; 25:233–241.

Gelinas C, Fillion L, Puntillo KA, Viens C, Fortier M. (2006). Val-idation of the critical care pain observation tool in adultpatients. American Journal of Critical Care; 15: 420–427.

Gries CJ, Curtis JR, Wall RJ, Engelber RA. (2008). Family membersatisfaction with end-of-life decision making in the ICU. Chest;133: 704–712.

Hall RI, Rocker GM. (2000). End of life care in the ICU: treat-ment provided when life support was withdrawn. Chest; 118:1424–1430.

Hawryluck LA, Harvey WRC, Lemieux-Charles L, Singer PT.(2002). Consensus guidelines on analgesia and sedation indying intensive care unit patients. BMC Medical Ethics; 3: www.biomedcentral.com/1472-6939/3/3 (accessed 15/12/09).

Healthcare Commission. (2007). Spotlight on Complaints. A Reporton Second-stage Complaints about the NHS in England. London:Commission for Healthcare Audit and Inspection.

Hov R, Hedelin B, Athlin E. (2007). Being an intensive care nurserelated to questions of withholding or withdrawing curativetreatment. Journal of Clinical Nursing; 16: 201–211.

Hugel H, Ellershaw J, Gambles M. (2006). Respiratory tract secre-tions in the dying patient: a comparison between glycopy-rronium and hyoscine hydrobromide. Journal of PalliativeMedicine; 9: 279–284.

ICNARC. (2010). Intensive Care National Audit and ResearchCentre. CMP case mix summary statistics. ICNARC. https://www.icnarc.org/documents/summary%20statistics%202008-9.pdf (accessed 29/08/10).

Kruse BG, Ruder S, Martin L. (2007). Spirituality and coping atthe end of life. Journal of Hospice and Palliative Nursing; 9:296–304.

Kutner JS, Smith MC, Corbin L, Hemphill L, Benton K, Mells K,Beaty B, Felton S, Yamashita TE, Bryant LL, Fairclough DL.(2008). Massage therapy versus simple touch to improve painand mood in patients with advanced cancer. Annals of InternalMedicine; 149: 369–380.

Latour JM, Fullbrook P, Albarran JW. (2009). EfCCNa survey:European intensive care nurses’ attitudes and beliefs towardsend-of-life care. Nursing in Critical Care; 14: 110–121.

Lautrette A, Ciroldi M, Ksibi H, Azoulay E. (2006). End-of-lifefamily conferences: rooted in the evidence. Critical CareMedicine; 34: S364–S372.

Lautrette A, Darmon M, Megarbane B, Joly LM, Chevret S,Adrie C, Barnoud D, Bleichner G, Bruel C, Choukroun G,Curtis JR, Fieux F, Galliot R, Garrouste-Orgeas M, Georges H,Goldgran-Toledano D, Jourdain M, Loubert G, Reignier J,Saidi F, Souweine B, Vincent F, Barnes NK, Pochard F,Schlemmer B, Azoulay E. (2007). A communication strategyand brochure for relatives of patients dying in the ICU. NewEngland Journal of Medicine; 356: 23–32.

Lloyd-Williams M, Morton J, Peters S. (2009). The end-of-lifeexperiences of relatives of brain dead intensive care patients.Journal of Pain and Symptom Management; 37: 659–664.

McCaughan E, Parahoo K. (2000). Medical and surgical nursesperceptions of their level of competence and educational needsin caring for patients with cancer. Journal of Clinical Nursing;9: 420–428.

Meltzer LS, Huckabay LM. (2004). Critical care nurses’ percep-tions of futile care and its effect on burnout. American Journalof Critical Care; 13: 202–210.

Morgan J. (2008). End-of-life care in UK critical care units – aliterature review. Nursing in Critical Care; 13: 152–161.

Morgan J. (2010). How to improve services for dying patients incritical care: adapting protocols. Nursing Times; 106: 16–18.

Nelson JE, Meier DE, Oei J, Nierman D, Senzel RS, Manfredi PL,Davis SM, Morrison RS. (2001). Self-reported symptom expe-rience of critically ill cancer patients receiving intensive care.Critical Care Medicine; 29: 277–282.

Neuberger J. (2003). Commentary: a good death is possible in theNHS. British Medical Journal; 326: 34.

Pattison N. (2006). A critical discourse analysis of provision ofend-of-life care in key UK critical care documents. Nursing inCritical Care; 11: 198–208.

Payeh JF, Bru O, Bosson JL, Lagrasta A, Novel E, Deschaux I,Lavagne P, Jacquot C. (2001). Assessing pain in critically illsedated patients by using a behavioural pain scale. CriticalCare Medicine; 29: 2258–2263.

Pochard F, Azoulay E, Chevret S, Lemaire F, Hubert P, Canoui P,Grassin M, Zittoun R, le Gall JR, Dhainaut JF, Schlemmer B.(2001). Symptoms of anxiety and depression in familymembers of intensive care unit patients: ethical hypothesisregarding decision-making capacity. Critical Care Medicine; 29:1893–1897.

Puntillo KA, McAdam JL. (2006). Communication between physi-cians and nurses as a target for improving end-of-life care in theintensive care unit: challenges and opportunities for movingforward. Critical Care Medicine; 34 (Suppl.): S332–S340.

Puntillo KA, Morris AB, Thompson CL, Stanik-Hutt J, White CA,Wild LR. (2004). Pain behaviors observed during six com-mon procedures: results from Thunder Project II. Critical CareMedicine; 32: 421–427.

Rushton CH. (1992). Care giver suffering in critical care nursing.Heart & Lung; 21: 303–306.

Shorter M, Stayt LC. (2010). Critical care nurses’ experiences ofgrief in an adult intensive care unit. Journal of Advanced Nurs-ing; 66: 159–167.

Simpson S. (1997). Reconnecting: the experiences of nurses caringfor hopelessly ill patients in intensive care. Intensive and CriticalCare Nursing; 13: 189–197.

Solano JP, Gomes B, Higginson IJ. (2006). A comparison of symp-tom prevalence in far advanced cancer, AIDS, heart disease,chronic obstructive pulmonary disease and renal disease. Jour-nal of Pain and Symptom Management; 31: 58–68.



Stayt LC. (2007). Nurses’ experiences of caring for families withrelatives in intensive care units. Journal of Advanced Nursing;57: 623–630.

Stayt LC. (2009). Death, empathy and self preservation: the emo-tional labour of caring for families of the critically ill in adultintensive care. Journal of Clinical Nursing; 18: 1267–1275.

Thornton JD, Pham K, Engelberg RA, Jackson JC, Curtis JR.(2009). Families with limited English proficiency receive lessinformation and support in interpreted intensive care unitfamily conferences. Critical Care Medicine; 37: 89–95.

Timmins F, Kelly J. (2008). Spiritual assessment in intensive andcardiac care nursing. Nursing in Critical Care; 13: 124–131.

Toscani F, Borreani C, Boeri P, Miccinesi G. (2003). Life at the endof life: beliefs about individual life after death and ‘gooddeath’ models – a qualitative study. Health and Quality of LifeOutcomes; 1: 65.

Trovo De Araujo MM, Paes Da Silva MJ. (2004). Communicationwith dying patients: perceptions of intensive care units’ nursesin Brazil. Journal of Clinical Nursing; 13: 143–149.

Truog RD, Campbell ML, Curtis JR, Haas C, Luce JM, RubenfeldGD, Rushton CH, Kaufman DC. (2008). Recommendations for

end-of-life care in the intensive care unit: a consensus state-ment by the American Academy of Critical Care Medicine.Critical Care Medicine; 36: 953–963.

Veerbeek L, van Zuylen L, Swart PV, van der Maas PJ, de Vogel-Voogt E, van der Rijt CCD, van der Heide A. (2008). The effectof the Liverpool Care Pathway for the dying: a multi-centrestudy. Palliative Medicine; 22: 145–151.

Walker W. (2001). Comprehensive critical care education is criticalto success. Intensive and Critical Care Nursing; 17: 237–241.

Walker R, Read S. (2010). The Liverpool Care Pathway inintensive care: an exploratory study of doctor and nurseperceptions. International Journal of Palliative Nursing; 16:267–273.

Wunsch H, Harrison D, Harvey S, Rowan K. (2005). End of lifedecisions: a cohort study of the withdrawal of all active treat-ment in intensive care units in the United Kingdom. IntensiveCare Medicine; 31: 823–831.

www.e-lfh.org.uk. (2009). e-learning for Healthcare: e-ELCA (Endof Life Care for All). http://www.e-lfh.org.uk/projects/e-elca/index.html (accessed 29/03/10).


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