Dr Peter B SherrenEmail- petersherren@gmail.comEvaluation of a new ‘Limitations and withdrawal of careframework’ order for...
__________________________________________________________________________AbstractIntroduction - The Intensive Care Unit (...
___________________________________________________________________________IntroductionThe Intensive Care Unit (ICU) is a ...
and doctors, where feedback was used to modify the framework. It was ready forimplementation in August 2008.Evaluation of ...
Statistics – The difference in the background knowledge mean (%) between the pre- andpost-framework questionnaire was anal...
authors, was asked to complete a questionnaire at that time. By simultaneously circulatingand then collecting the question...
Background knowledge - The average mean score for the background knowledge portion ofthe questionnaire showed a statistica...
Table 4. Questions relating to whether or not clinicians are satisfied with current withdrawalpractice. Comparison of4. Qu...
single centre study, there was scope to tailor the framework appropriately on the basis offeedback received from the relev...
to encourage the use of the phrase ‘End-of-Life care framework’, in an attempt to shift thefocus away from the withdrawal ...
References    1. Angus DC, Barnato AE, Linde-Zwirble WT, et al. Use of intensive care at the end-of-       life in the Uni...
17. The SUPPORT principle investigators. A controlled trial to improve care for seriously        ill hospitalized patients...
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End of life care, ICU framework

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End of life care, ICU framework

  1. 1. Dr Peter B SherrenEmail- petersherren@gmail.comEvaluation of a new ‘Limitations and withdrawal of careframework’ order form – pilot studyPeter B Sherren*, Louise Turnbull, Selvarajah YoganathanSpecialist registrar Anaesthesia and Intensive care, Sister Intensive Care,Consultant Anaesthesia and Intensive care.Department of Anaesthesia and Intensive care, Queen’s Hospital, Romford,United Kingdom.* Corresponding authorKeywords - ICU, end-of-life care, withdrawal of care, framework, palliative careEvaluation of a new ‘Limitations and withdrawal of care framework’ order form on the intensive care unit, PBS 1
  2. 2. __________________________________________________________________________AbstractIntroduction - The Intensive Care Unit (ICU) is a setting where death is common; it hasbeen suggested that 20% of patients die on the ICU. Given the majority of ICU deathsinvolve the withholding or withdrawing of treatment, the importance of end-of-life care isclear. Despite this frequency, studies suggest that the current quality of end-of-life care issuboptimal. As a result, the authors developed a new framework to tackle this issue. Theframework produced was a five-page document, addressing the pertinent issues of end-of-lifecare.Methods – The new framework was introduced over a one-year period. An assessmentquestionnaire was circulated to staff pre- and post- implementation to demonstrate anyimprovements in end-of-life care.Results - The framework was found to be helpful by 97% of respondents and was associatedwith an improvement in communication and knowledge of end-of-life care. There was also anincrease in the number of staff who felt that patients, along with having theiranalgesia/sedation needs met, were now experiencing care that was more conducive to a goodquality of dying.Conclusions – The introduction of the new end-of-life care framework was associated withimprovements in: knowledge of the subject; clinician satisfaction with the process; and staff-reported clinical care. Further work is required to assess the potential benefits of this workbeyond a single centre.___________________________________________________________________________Evaluation of a new ‘Limitations and withdrawal of care framework’ order form on the intensive care unit, PBS 2
  3. 3. ___________________________________________________________________________IntroductionThe Intensive Care Unit (ICU) is a setting where death is unfortunately common; it hasrecently been suggested that 20% of patients die on the ICU1. End-of-life care is a vital skillfor all intensivists, given the majority of intensive care deaths (approaching 64.5% 2) involvethe withholding or withdrawing of treatment2-4. The UK National Health Service (NHS)published guidelines in 1996 in an attempt to rationalise intensive care provision5. Amongst avariety of principles involved in the decision-making process is the ideology that, once adecision to limit support is made, the options available to the physician are: discharge;making comfortable; or withdrawal of ventilatory support. The process of withdrawal isundoubtedly more complex and a number of studies have suggested that the current quality ofend-of-life care is suboptimal on the ICU6,7. Given the concept that, when withdrawing care,treatment never stops but simply the goals of care change8, it is clear that the medicalprofession need to concentrate on education to deliver a consistently high standard in allaspects of end-of-life care. Since contact with the dying ICU patient is not confined to oneprofession or level of seniority, education should be multidisciplinary and inclusive in nature.By doing so, it should be possible to avoid the previous frustration experienced by criticalcare nurses with the end-of-life care provided by physicians9,10.In 2004, the group behind the Liverpool Care Pathway for the Dying recognised the need forcontinuity and high quality withdrawal on the ICU, when the comprehensive 22-pageframework Care of the Dying Pathway (LCP) Hospital Intensive Care Unit was produced11.The concern is that health care workers may be discouraged to complete such acomprehensive document given critically ill patients typically have a shorter dying phase,with a mean of only four hours12. In fact, while implementing the LCP in a busy tertiaryhospital emergency department, Paterson et al demonstrated incomplete pathwaydocumentation in 49% of cases13. The level of documentation seemed to be directly related tomedian survival time13. Because of this, there appears to be a need for a simplifiedframework, which also addresses some of the technical details required for the withdrawal ofcomplex support.ObjectiveThe objective of the framework was to demonstrate improvements in staff’s knowledge andexperiences with end-of-life care.MethodsThe Framework – A new Limitations and withdrawal of care framework (Appendix 1) wasdeveloped using guidance from a variety of sources including the General Medical Council’sGood medical practice14 and the British Medical Association’s Withholding and WithdrawingLife-prolonging Medical Treatment15. The aim was to develop a concise and easy to useframework, which would improve communication and end-of-life care, while, at the sametime, not overly regimenting and standardising practice. The framework produced was a five-page document containing limitation and withdrawal sections, as well as an appendix.Following development, it was put forward at the critical care meeting to both senior nursesEvaluation of a new ‘Limitations and withdrawal of care framework’ order form on the intensive care unit, PBS 3
  4. 4. and doctors, where feedback was used to modify the framework. It was ready forimplementation in August 2008.Evaluation of Framework - The setting was a large district general hospital with a tertiaryneurosurgical centre in Romford (UK). The hospital has 939 beds with 16 general and 12neuro critical care beds.The framework was introduced to the general ICU in September 2008 and was used for a oneyear period, at which time a post-framework analysis was undertaken. Prior toimplementation, there were teaching sessions arranged on use of the framework. These werecarried out for the nurses at their monthly meeting and for the doctors at their weeklyteaching. All consultants were versed in the use of the framework and one of the authors wasavailable by phone if any further questions arose regarding its use.The framework was aimed at all members of staff who were closely involved in thewithdrawal process, such as the nurses and junior doctors. Although senior trainees andconsultants would be involved in completing the framework, the authors were keen to illicitthe opinions of the junior doctors and nurses that would be involved utilising the frameworkto guide clinical practice.Pre- and post-framework questionnaires (Appendix 2 and 3) would be analysed todemonstrate whether there were any improvements in the following areas of end-of-life care: • Staff background knowledge • Quality of life for the dying patient, based on staff’s subjective opinion • Clinician satisfactionThe staff’s background knowledge was assessed using 17 closed questions relating to end-of-life care. The mean scores were compared following the introduction and use of theframework for one year. Quality of life of the dying patient was assessed using staff’ssubjective experience of patient comfort during end-of-life care. The questions were ‘yes orno’ answers, although, on this occasion, if they answered ‘yes’, they were asked to score theirconfidence in their answer on a scale of 1-10. Scoring was used to evaluate whether or not theconfidence scores of staff answering ‘yes’ would improve post-framework introduction. Staffsatisfaction with the framework itself, and end-of-life care as a whole, was ascertained usingquestions relating to the level of support, clarity of instructions and confidence in managingwithdrawal. Here again, ‘yes or no’ questions were asked, and ‘yes’ answers were confidencescored 1-10.The post-framework questionnaire was only to be completed by staff that had used theframework.The data was collected in an anonymous manner. The consultant body felt that writtenconsent and formal ethical approval was not required given it represented a qualityimprovement process, and because no other framework was being utilised at that point intime.Evaluation of a new ‘Limitations and withdrawal of care framework’ order form on the intensive care unit, PBS 4
  5. 5. Statistics – The difference in the background knowledge mean (%) between the pre- andpost-framework questionnaire was analysed using the student’s t-test, given the parametricdistribution of the unequal groups.To compare the two groups (pre- and post-framework) and the two outcomes (‘yes or no’answers) within the ‘Quality of life for the dying patient’ and ‘Clinician satisfaction’components of the questionnaire, two by two contingency tables were constructed and chi-squared tests were performed.‘Confidence scores (1-10)’ for each question are presented as medians. For further analysis,the questions were categorised according to whether they related to ‘Quality of life for thedying patient’ and ‘Clinician satisfaction’. To compare this categorical/ordinal data for thetwo groups (pre- and post-framework) for each category, contingency tables and chi-squaredtest were performed.A p-value of less than 0.05 was considered statistically significant.ResultsOn the general ICU at Queen’s Hospital there are approximately 51 nurses and up to 8 traineedoctors rotating through the unit at any one time. A pre-framework questionnaire wascirculated prior to implementation, to assess knowledge and opinions regarding the end-of-life care at that time. For the pre-framework questionnaire, 39 responses were collected, ofwhich 37 (63% of ICU staff) were complete. The framework was then introduced for a yeartrial period, to allow enough time for a variety of people to gain experience of its use (Table1).Table 1. Professions and grades of the pre- and post-framework respondents. Profession and grade Pre-framework Post-framework n=37 n=33 Nurse • Band 5 8 6 • Band 6 8 6 • Band 7 14 12 Doctor • Foundation Year 3 4 Doctors 1-2 • Specialist Trainee, 2 2 Year 1 • Specialist Trainee 2 3 Year 2During this period, 67 patients that had their care limited or withdrawn according to theIntensive Care National Audit & Research Centre (ICNARC) database. The new frameworkwas completed for 54 of these patients during their end-of-life care. Between September andOctober 2009, the post-framework data collection was undertaken. Any staff member thatsaid they had used the framework on one or more occasion, when directly questioned by theEvaluation of a new ‘Limitations and withdrawal of care framework’ order form on the intensive care unit, PBS 5
  6. 6. authors, was asked to complete a questionnaire at that time. By simultaneously circulatingand then collecting the questionnaires face-to-face, we hoped to limit the potential responsebias of self-motivated individuals with positive experiences. Of the post-frameworkquestionnaires distributed, we collected 36 responses; of those questionnaires, 33 (56% ofICU staff) were complete (Table 2).Table 2. Pre- and post-framework questionnaire results, comparing general knowledge, cliniciansatisfaction and quality of life of dying patients during end-of-life care. *Denotes statistically significant result (p <0.05). Pre Post p- framework framework Value n=37 N=33 Background knowledge on end 62.3 70.3 0.02* of life care % (Standard (12.6) deviation, SD) (14.1) Clinical benefits and Staff Yes No Yes No p- satisfaction Value Is the current withdrawal practice 21 16 27 6 0.04* meeting the sedation/analgesia needs of the dying patients? Is the current withdrawal practice 15 22 23 10 0.02* conducive to a good quality of life for the dying patient? Do you feel supported during the withdrawal process by • Nursing staff? 28 9 27 6 0.57 • Junior Doctors? 20 17 20 12 0.63 • Consultants? 21 16 24 9 0.32 Do you receive clear/concise 16 21 29 4 0.0001 instructions on withdrawal, either * verbal or written? Do you feel confident in the 23 14 26 7 0.06 process of managing withdrawal of care on the ICU?Evaluation of a new ‘Limitations and withdrawal of care framework’ order form on the intensive care unit, PBS 6
  7. 7. Background knowledge - The average mean score for the background knowledge portion ofthe questionnaire showed a statistically significant improvement from 62.3% to 70.3% (p-0.02). Issues pertaining to the provision of sedation/analgesia during extubation and the dyingprocess showed the greatest improvement in scores post-framework. This was closelyfollowed by the group of questions relating to the technical aspects of withdrawingventilatory support.Quality of life for the dying patient – There was a statistically significant increase in thenumber of clinicians who felt that, in questions relating to the quality of life for the dyingpatient, that there was an improvement in care provided post-framework (p- 0.001). Increasein the number of staff that felt analgesia and sedation needs were being met wasdemonstrated (21 to 27). The other positive outcome within this field was that a greaterproportion of the ICU staff felt that, post-introduction of the framework, the withdrawalpractice was conducive to a good quality of life for the dying patient.Table 3. Questions relating to whether or not current practice is conducive to a good quality of life forthe dying patient. Comparison of confidence scores whether or not current practice is post Table 3. Questions relating to of respondents who answered ‘yes’ pre- andframework. conducive to a good quality of life for the dying patient 34 35 31 31 30 26 25 25 % of total responses 20 18 16 Pre-Framew ork 15 Post-Framew ork 10 8 6 5 3 3 0 0 0 0 1-4 5 6 7 8 9 10 Confidence score for yes answ ers (1-10)Clinician satisfaction - This section of the questionnaire related to staff satisfaction with theframework itself and end-of-life care has a whole. The feedback from the 33 respondents whohad experience with the framework was very positive, and 97% (32) found the frameworkuseful. Post-framework there was a statistically significant increase in the number ofclinicians who were satisfied with the current withdrawal process (p- <0.001). This wasmeasured by questions relating to: the levels of support experienced; the presence of verbaland written communication of decisions; and overall confidence in managing withdrawal onthe ICU. In addition to the increase in the absolute number of clinicians that were satisfied,there was also an increase in the confidence scores reported post-framework (p-value<0.001).Evaluation of a new ‘Limitations and withdrawal of care framework’ order form on the intensive care unit, PBS 7
  8. 8. Table 4. Questions relating to whether or not clinicians are satisfied with current withdrawalpractice. Comparison of4. Questions relating to whether or not ‘yes’ pre- andare Table confidence scores of respondents who answered clinicians post-framework satisfied with current withdrawal practice 35 33 31 31 30 26 % of total responses 25 20 20 Pre-Framew ork 14 15 15 13 Post-Framew ork 10 5 6 5 2 2 1 1 0 1-4 5 6 7 8 9 10 Confidence scores for yes answ ers (1-10)DiscussionEnd-of-life care on the ICU is regrettably a topic that in the past has often been neglected6,7.Despite the various guidelines and frameworks11 available for facilitating end-of-life care onthe ICU, our experience, and those of others, is that witnessed clinical practice is stillfrequently suboptimal16. Nelson et al conducted a postal survey looking at end-of-life careprovision on 600 ICUs in the United States16. 80% of the respondents felt that the followingstrategies were likely to improve end-of-life care: trainee role modelling by experiencedclinicians; clinician training in communication and symptom management; regular meetingsof senior clinicians with families; bereavement programs; and end-of-life care qualitymonitoring16. However, few of these strategies were widely available on any of theresponding units16. The SUPPORT trial attempted to address this issue, with a multi-centrerandomised control trial17; however, it failed to demonstrate any benefit of providing a nursespecially trained in end-of-life care on the ICU. The role of this nurse was to encouragemultiple contacts with the patient, family, physician and hospital staff to elicit preferences,improve understanding of outcomes, encourage attention to pain control, and facilitateadvance care planning and communication. The reason for this failure was multi-factorial.One of the principal limiting factors suggested was that the intervention did not actuallyaffect the system of care at the target institutions because of strong psychological and socialfeelings that underpinned their current practices18. What can be learnt from this is that eventhe best model will fail to achieve the desired outcome without all clinicians being inagreement, and implementing the model in the manner it was intended.The Limitation and withdrawal of care framework was introduced to provide a means forquality improvement in the care provided to the dying patient on the ICU. Analysis of thequestionnaires demonstrated that the framework had been well received, with 97% ofrespondents reporting it to be helpful. The key to this success was due to the fact that, as aEvaluation of a new ‘Limitations and withdrawal of care framework’ order form on the intensive care unit, PBS 8
  9. 9. single centre study, there was scope to tailor the framework appropriately on the basis offeedback received from the relevant staff. It was felt that, in some respects, this should be themodel for future research and the authors would suggest that trying to standardise practiceacross multiple institutions will only result in non-compliance and further gaps in care.The introduction of the framework, along with the associated and necessary education, didinstil some enthusiasm for end–of-life care and, despite a relatively crude assessment, therewas a statistically significant improvement in the staff’s level of knowledge of the topic.Improving knowledge and communication during the withdrawal process were key outcomes.As a result of this, it was hoped an improvement in the clinical care experienced by patientswould also be revealed. The post-framework analysis showed an increase in the number ofstaff who now felt that patients were having their sedation and analgesia needs met. Furtherto this, it was also felt that the care provided post-introduction of the framework was moreconducive to a good quality of life for the terminally ill.Without direction, the improvements in knowledge would have been wasted, and one of themost valuable achievements of the framework was to provide a medium for communicatingclear instructions for withdrawal. Although this was an understandable result whenintroducing a framework, it was anecdotally one of the outcomes that nursing staff mostappreciated, and ensured a good continuity of care.In questions relating to clinician satisfaction with the end-of-life care provided, there was astatistically significant increase in both the number of clinicians satisfied with practice andtheir confidence scores (p- <0.001).There were a number of limitations with this work. The first sets of problems are thoseinherently related to a pre- and post- questionnaire single centre design. As suggested earlier,the benefit of adopting a single centre design is that the framework can be customised for therelevant staff, however, this opened up the work to bias in the form of the temporal changesassociated with the surrounding interest and education. Along with this, performing a study ina single institution where authors and respondents work together means that there may havebeen an eagerness to assist in a positive outcome. Although attempts to limit response biaswere undertaken, there was still a risk of selection bias. Not all of the ICU staff would haveused the new framework within the year trial period; however, the overall response of 33 ofthe 59 staff (56%), possibly represented a missed opportunity for feedback. A pre/post designdoes not allow identification of the reasons for any potential improvements witnessed, all thatcan be reported are the statistical differences demonstrated and the potential factors involved.The best measures for patient quality of life during withdrawal are the self-reportedsymptoms of the patient involved. However, this can be technically difficult when dealingwith the severe organ dysfunction and the inadequate cerebration often seen on the ICU. Asurrogate measure is the first-hand observations of the care givers in the patient’s final hours,and it was these subjective opinions we relied upon in establishing potential improvements inthe quality of care.The authors realise that the title of this framework ‘Limitations and withdrawal of care’ couldhave negative connotations. Although the term ‘withdrawal of care’ is commonly used and isuniversally understood terminology amongst intensivists; moving forward, we will endeavourEvaluation of a new ‘Limitations and withdrawal of care framework’ order form on the intensive care unit, PBS 9
  10. 10. to encourage the use of the phrase ‘End-of-Life care framework’, in an attempt to shift thefocus away from the withdrawal of organ support and toward the vital process of providingcomprehensive and high quality care for the dying.ConclusionsEnd-of-life care is, historically, an undervalued and sometimes poorly understood componentof care on the ICU. The new targeted framework was found to be helpful by the majority ofrespondents and was associated with improvements in knowledge of the topic and cliniciansatisfaction. There was also seen to be an increase in the number of staff who felt thatpatients, along with having their analgesia/sedation needs met, were now experiencing carethat was more conducive to a good quality of life during their terminal illness. Follow-upwork and research should be undertaken to establish potential benefits of this frameworkbeyond a single centre.___________________________________________________________________________Authors contributions - PBS and SY were involved in the design of the trial andframework. PBS and LT were involved in data collection. PBS prepared the draft and allauthors were involved in revising the final manuscript. All authors have read and approvedthe final manuscript.Acknowledgments - This paper did not receive any grant or funding from any agency in thepublic, commercial or not-for-profit sector.Declaration of interests - All authors declare that there is no conflict of interest that could beperceived as prejudicing the impartiality of the paper.Presented Presented at the 30th International Symposium on Intensive Care and Emergency Medicine, Brussels (March 2010)___________________________________________________________________________Evaluation of a new ‘Limitations and withdrawal of care framework’ order form on the intensive care unit, PBS 10
  11. 11. References 1. Angus DC, Barnato AE, Linde-Zwirble WT, et al. Use of intensive care at the end-of- life in the United State: epidemiologic study. Crit Care Med 2004; 32: 638-643. 2. Wood GG, Martin E. Withholding and withdrawing life-sustaining therapy in a Canadian intensive care unit. Can J Anaesth 1995; 42 (3): 186-191. 3. Prendergast TJ, Luce JM. Increasing incidence of withholding and withdrawing life support from the critically ill. Am J Resp Crit Care 1997; 155: 15-20. 4. Treece PD, Engelberg RA, Crowley L, et al. Evaluation of a standardised order form for the withdrawal of life support in the intensive care unit. Crit Care Med 2004; 32 (5): 1141-1147. 5. NHS Executive working party. Guidelines on admission to and discharge from the intensive care and high dependency unit. London: Department of Health, March 1996. 6. Desbiens NA, Wu AW. Pain and suffering in the seriously hospitalised patients. J Am Geriatr Soc 2000; 48: S183-186 7. Nelson JE, Meier D, Oei EJ, et al. Self reported symptom experience of critically ill cancer patients receiving intensive care. Crit Care Med 2001: 29; 277-282. 8. Girbes ARJ. Dying at the end-of-life. Intensive Care Med 2002; 28: 1197-1199. 9. Asch DA, DeKay ML. Euthanasia among US critical care nurses: Practices, attitudes, and social and professional correlates. Med Care 1997; 35: 890-900. 10. Asch DA, Shea JA, Jedrziewski MK, et al. The limits of suffering: Critical care nurses’ views of hospital care at the end-of-life. Soc Sci Med 1997; 45:1661-1668. 11. Liverpool Care Pathway. Care of the Dying Pathway (LCP) Hospital Intensive Care Unit. http://www.mcpcil.org.uk/liverpool-care-pathway/pdfs/LCP-ICU-version11.pdf 12. Hall JI, Rocker GM. End-of-life care in the ICU: Treatment provided when life support is withdrawn. Chest 2000; 118: 1424-1430 13. Paterson BC, Duncan R, Conway R, et al. Introduction of the Liverpool Care Pathway for the end-of-life care to emergency medicine. Emer Med J 2009; 26:777-779 14. General Medical Council. Withholding and withdrawing life-prolonging treatments: Good practice in decision making. Good Medical Practice 2006. http://www.gmc- uk.org/guidance/ethical_guidance/witholding_lifeprolonging_guidance.asp 15. BMA Medical Ethics Committee. Withholding and Withdrawing Life-prolonging Medical Treatment. BMJ Books 1999; ISBN 0-7279-1456-1. 16. Nelson JE, Angus DC, Weissfeld LA, Puntillo KA, Danis M, Deal D, Levy MM, Cook DJ. End-of-life care for the critically ill: A national intensive care unit survey. Crit Care Med. 2006 Oct;34(10):2547-53Evaluation of a new ‘Limitations and withdrawal of care framework’ order form on the intensive care unit, PBS 11
  12. 12. 17. The SUPPORT principle investigators. A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA 1995; 274:1591-8. 18. Lynn J, Arkes HR, Stevens M, et al. Rethinking fundamental assumptions: SUPPORTs implications for future reform. Study to Understand Prognoses and Preferences and Risks of Treatment. J Am Geriatr Soc. 2000; 48: S214-221.Appendix LegendAppendix 1. Limitation and withdrawal of care frameworkAppendix 2. Pre-framework questionnaireAppendix 3. Post-framework questionnaireEvaluation of a new ‘Limitations and withdrawal of care framework’ order form on the intensive care unit, PBS 12

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