Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary

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1 Coflict Resolutio i Ed of Life Settigs (CRELS) Fial CRELS Project Workig Group Report Icludig Cosultatio Summary

2 NSW DEPARTMENT OF HEALTH 73 Miller Street NORTH SYDNEY NSW 2060 Tel. (02) Fax. (02) TTY. (02) Produced by: Research, Ethics & Public Health Traiig Brach Populatio Health Divisio NSW Departmet of Health Tel. (02) Fax. (02) This work is copyright. It may be reproduced i whole or i part for study traiig purposes subject to the iclusio of a ackowledgemet of the source. It may ot be reproduced for commercial usage or sale. Reproductio for purposes other tha those idicated above requires writte permissio from the NSW Departmet of Health. NSW Departmet of Health 2010 SHPN: (CER) ISBN: Further copies of this documet ca be dowloaded from the NSW Health website Revised August 2010

3 Cotets Ackowledgemets... 2.Letter from CRELS Workig Group Chair. to the Director-Geeral for Health... 3 Sectio 1 Executive Summary... 4 Figure 1: Resolvig EOL coflicts where the patiet does ot have decisio-makig capacity...7 Sectio 2 Itroductio... 9 Sectio 3. Backgroud Literature review CRELS project: Terms of Referece CRELS project: Process...12 Sectio 4. Factors Cotributig. to Ed of Life Coflicts Coflicts withi the health care team Commuicatio problems Emotioal resposes to dyig ad loss Medical culture ad ed of life decisios Difficulties predictig dyig ad coveyig poor progosis Iadequate EOL advace care plaig processes Impact of other system processes Uderstadig cross-cultural issues Risk maagemet cocers & iterface with legal processes Health professioals uderstadig of ethics ad law i relatio to EOL decisios Expectatios about moder medical miracles Specialisatio i medicie ad risk of fragmetatio of care Additioal issues i paediatric settigs...26 Sectio 5. Resposes & Recommedatios Allowig time ad further discussios Holdig family cofereces for EOL decisios best practice Seekig secod medical opiio to assist family decisio-makig Improvig capacity i cross-cultural settigs Improvig advace care plaig Improvig commuicatio skills Improvig uderstadig of ethical ad legal issues i relatio to EOL decisios Escalatig maagemet of ed of life coflicts: Optios Obtaiig legal advice ad/or legal itervetio Mediatio or facilitated egotiatio for ed of life coflicts Role of cliical ethics committees ad cliical ethics cosultatio Providig support to cliicias i escalatig/protracted EOL coflict Developig a EOL coflict tool kit for maagig escalatig EOL coflict Evaluatio ad learig from practice...35 Sectio 6. Coclusio Appedices Factors cotributig to EOL coflict Process of ed-of-life decisio-makig (NSW Health GL2005_057) Workig Group membership Ed of Life Care Pla (Sydey Childre s Hospital, SESIAHS) Abbreviatios Glossary Refereces Cosultatio Summary CRELS Project Workig Group Report NSW Health PAGE 1

4 Ackowledgemets The CRELS Workig Group was impressed by the degree of ethusiastic egagemet with this project durig cosultatio. The importace of improvig this difficult aspect of cliical care was commeted o by may who provided advice. The Workig Group wishes to thak all those who provided feedback for their time, thoughtful participatio ad isightful commets. PAGE 2 NSW Health CRELS Project Workig Group Report

5 Letter from CRELS Workig Group Chair to the Director-Geeral for Health Professor Debora Picoe AM Director-Geeral NSW Health 73 Miller Street North Sydey NSW 2060 Dear Professor Picoe Please accept this Coflict Resolutio i Ed of Life Settigs (CRELS) Project Workig Group Report. Part of the backgroud to this project was a sese from some seior cliicias that the NSW Health Guidelies for ed of life care ad decisio-makig itroduced the cocept of shared decisio makig at the ed of life, but gave isufficiet guidace as to how best to achieve cosesus, or what to do whe cosesus was ot forthcomig. Coflict may arise uder these circumstaces, ad some high-profile court cases i NSW showed how serious this could become. This Workig Group was set Terms of Referece that gave it scope to look at factors provokig ed of life coflict i adult ad paediatric settigs, ad at ways to reduce the risk of this coflict escalatig. Despite the icreasig frequecy ad complexity of ed of life decisios made by cliicias i NSW, the Workig Group foud o evidece of a surge i coflict or of a crisis of public cofidece. However, all the people ivolved i this Report took ed of life coflict very seriously, ad felt that whe it occurred it had a strog egative impact o all cocered, which was sometimes perpetuated over years or eve geeratios. I summary, ed of life coflict is a ucommo but potetially grave problem for all of us. I lookig at possible ways to prevet, mitigate or maage EOL coflict, the Workig Group was gratified to fid a large umber of plausible strategies. I some cases these came as suggestios from experts or the public, ad others are to some degree evidece-based. I categorisig the recommeded strategies, we chose to use short, medium ad log term. This is meat to reflect a feelig from the Workig Group that some strategies were more urget, ad perhaps more immediately practicable tha others. It does ot imply that the loger term recommedatios are graded as less importat. I lie with our Terms of Referece, the Workig Group also idetified ad prioritised a umber of areas where further cosultatio ad ivestigatio may be required. The Workig Group would like to thak NSW Health for supportig this ivestigatio, ad all the doctors, urses, social workers, parets ad members of the public who gave their time so geerously. Fially, as Chair of the CRELS Workig Group, I would like to thak all Workig Group members without whose expertise ad willigess to critically examie ad debate a host of very complex issues, this process would have ot produced such a comprehesive review ad costructive way forward. Yours sicerely Dr Peter Saul Chair, CRELS Project Workig Group Seior Itesivist, Joh Huter Hospital Newcastle NSW CRELS Project Workig Group Report NSW Health PAGE 3

6 SECTION 1 Executive Summary Decisios to limit use of life-sustaiig treatmets for dyig patiets are made every day i NSW hospitals ad other care settigs. Most of these egotiatios go well ad agreemets are reached betwee patiets, families ad the health care team. However, coflicts ca ad do happe. These coflicts may occur withi families, betwee health professioals ad treatig teams, ad betwee families of patiets who have lost capacity ad treatig teams. Occasioally they directly ivolve a patiet with capacity or border-lie capacity. Evidece 1 suggests that coflict i ay of these loci cotributes to a poor outcome. I this Report, coflict should be take to iclude ay or all of these settigs. We have defied coflict broadly, as a failure to achieve cosesus o the goals of care ad related treatmet at the ed of life, despite allowig time ad holdig reasoable repeat discussios betwee ivolved parties. Sometimes ed of life coflicts (EOL coflict) evolve ad are resolved i a day or two. Others ufold over weeks, or eve moths i some cases. These coflicts are ot just a issue for Itesive Care Uits (ICU) ivolvig decisios aroud use of high-tech treatmets, although these settigs have produced several high profile cases i NSW. 2,3,4 However, most of the populatio die outside of itesive care uits ad thus treatmet limitatio decisios made across a rage of cliical settigs have the potetial for coflict. The majority of idividuals however die withi hospital ad hospice settigs i NSW. While advace care plaig discussios are essetial i commuity ad primary care settigs, most disputes about use of life sustaiig treatmets at EOL still predomiatly play out i hospitals. This Report ad its recommedatios focus largely o the hospital settig. A cosequece of failig to reach cosesus 5 is a escalatio of the treatmet limitatio decisio from the usual, purely private paradigm to uit or istitutio maagemet, or eve beyod to the full public 1 Witer L, Mockus Parks S. Family Discord ad Proxy Decisio Makers Ed-of-Life Treatmet Decisios. Joural of Palliative Medicie 2008;11(8): Northridge v Cetral Sydey Area Health Service [2000] NSWSC 1241 revised 17/01/ Isaac Messiah (by tutor Magdy Messiha) v South East Health [2004] NSWSC 1061 (11 November 2004) 4 Krommydas v Sydey West Area Health Service [2006] NSWSC See Glossary scrutiy of the Health Care Complaits Commissio, tribuals ad Courts. Wherever EOL coflict occur, they eed to be maaged i a timely maer which focuses o the best iterests 6 ad best outcome for the patiet. Delays ad protracted discussios with family may defer decisio-makig for the patiet ad prolog the patiet s discomfort, distress or pai i the dyig phase of their illess. EOL coflict i NSW appear to be broadly geerated by problems with ieffective commuicatio, disparate expectatios, avoidace of EOL discussios, ad time costraits. Other factors idetified iclude missed opportuities for timely advace care plaig discussios; risk maagemet cocers; fragmetatio of care ad commuicatio across multiple teams; emotioal resposes to loss ad dyig; ad health professioal ad/or commuity misuderstadig about some ethical ad legal issues related to ed of life decisios. Resolvig EOL coflict i crosscultural settigs ca raise additioal complexities aroud cultural assumptios ad taboos associated with death ad dyig. Trasitio times appear to be a high risk time for EOL coflict, for example where a patiet moves from paediatric-adult care, acute-palliative care, or to oset of termial care. Importatly, there eeds to be better recogitio of whe patiets eter the dyig phase i their illess trajectory tha curretly occurs. Appedix 1 provides a overview of factors predisposig to coflict i ed of life decisios. Most coflicts are probably achored i some form of commuicatio breakdow. The most effective strategies for prevetig ad maagig EOL coflict are therefore likely to be those that address this aspect of cliical practice. Allowig families sufficiet time ad holdig iterative, ope discussios with them where patiets ca o loger decide for themselves remai the critical elemets i miimisig ad resolvig these disputes. Well plaed ad maaged family cofereces emerge as a powerful mechaism for geeratig uderstadig ad agreemet 6 See Glossary PAGE 4 NSW Health CRELS Project Workig Group Report

7 about EOL decisios. Efforts to resolve disagreemet ad forge a cliical cosesus betwee cliical teams before approachig families to discuss limitatio of life-sustaiig treatmet are essetial ad could be improved i curret practice. Some EOL coflict will oetheless require strategies beyod these maistays of cosesus-buildig. This report outlies a umber of optios. Figure 1 outlies the process proposed by the Workig Group for resolvig EOL coflict i cases where the patiet does ot have decisio-makig capacity. Most of the measures likely to yield the greatest improvemets are already i place i the NSW public health system but eed stregtheig ad wider adoptio. Importatly, there are o magic bullets i this difficult area of cliical practice. The more cotetious optios examied by the Workig Group have low levels of evidece as to appropriate modellig ad efficacy i this specific area, despite their use i some overseas jurisdictios. I particular, this applies to mediatio ad use of cliical ethics committees or ethics case cosultatio. These are discussed i this Report ad recommedatios are made that support further ivestigatio of appropriate models ad their evaluatio i practice. Overall, the Workig Group foud there is relatively little overseas ad almost o local evidece aroud what works with EOL coflict. The Courts ad tribuals will always be eeded to resolve a very small proportio of itractable EOL coflict. This is however, a rare occurrece, especially whe cosidered i relatio to the level of activity aroud ed of life decisios i the NSW public health system. While it is difficult to estimate accurately, there are probably hudreds of EOL decisios made every day across care settigs i NSW. What is apparet is that there is widespread apprehesio amogst health professioals about becomig ivolved i Court processes. This is despite less tha 10 ed-of-life decisio-makig cases requirig rulig by the Courts (excludig Guardiaship Tribual) or beig subject to subsequet compesatio litigatio over the last decade i NSW. That these high level EOL coflict are so ifrequet is testamet to the skill ad sicere efforts of health professioals as well as the practical wisdom of families. Noetheless, these cases appear to have geerated real fears. It is also clear that resolvig these coflicts ca be time cosumig. Skilled cliicias holdig iterative discussios with families, particularly where patiets are icapable, that are coordiated to ivolve the relevat health professioals is the key to doig this well. However, this takes time ad time is a precious resource i the prevailig health system climate. This has implicatios the for appropriate cliical coverage to esure that cliicias ca be freed from other cliical resposibilities. Oly whe sufficiet time is allowed ad these discussios are widely valued will they become prioritised i daily practice. Health professioals across care settigs idetified the eed for improved access to ad availability of palliative care services i NSW as importat for trasitioig care ad expectatios about that appropriately. At the same time, there is eed for cotiued efforts to dispel the otio that palliative care is limited to the termial phase of life. Referral to palliative care still comes with a stigma for a proportio of patiets ad their families. Complicatig matters is that there is o systematically collected data about EOL coflict i NSW, ad possibly other Australia jurisdictios. I particular, the Workig Group was uable to obtai precise data o the coflicts take to the NSW Health Care Complaits Commissio or NSW Guardiaship Tribual, or o the outcomes of mediatios ad ruligs made by them. Practice improvemet critically higes o availability of data about both low ad high level EOL coflict ad recommedatios have bee made for evaluatio ad routie data collectio. Despite a uclear picture about the curret icidece ad full complexio of EOL coflict i NSW, these coflicts do matter. The Workig Group recogised sigificat adverse impacts at a umber of levels affectig patiets, families, health professioals ad the broader health system. Recogisig the limitatios i local empirical data, this Report has bee developed based o Workig Group members expertise, ad their cosideratio of the literature i this area, as well as the resposes received durig project cosultatios. What is clear is that health professioals, icludig seior cliicias with primary resposibility for egotiatig a cosesus decisio, eed support i these ofte itesely difficult situatios. Metorig, debriefig ad other support processes are recommeded. CRELS Project Workig Group Report NSW Health PAGE 5

8 The way forward Establishmet of this project ad the fidigs of this Report are ot a reflectio that crisis exists i ed of life decisiomakig i NSW. The objective of this Report is pricipally to improve decisio-makig ad care at the ed of life i ways that are cosistet with the values that uderpi our public health care system. This is ot a guidelie, but rather a blueprit that outlies areas warratig further ivestigatio, stregtheed practice or ew iitiatives required to meet that goal. This CRELS Workig Group Report to NSW Health outlies 31 recommedatios. Some recommedatios simply affirm curret practice. Others are practical iitiatives that ca be iitiated i the short term ad which fall withi the remit of NSW Health. Others require referral to ad cosideratio by other agecies ad bodies. Fially, some call for log-term cultural ad system chages. The Workig Group s recommedatios are detailed i Sectio 5 Resposes ad Recommedatios. By way of summary, these are grouped below accordig to projected developmet ad implemetatio timeframes. Short term Recogise ad reiforce that time ad further discussio with families remais the maistay of EOL coflict maagemet (Rec 5.1.1). Develop best practice advice o maagig EOL family cofereces & icorporate this ito curret ad future EOL care pathways or other EOL care plas (5.2.1, 5.2.2). Itroduce EOL coflict audit i NSW Itesive Care Uits ad other cliical areas where EOL decisios are frequet (5.10.1, ) to eable evaluatio of EOL coflict locally. Develop a EOL coflict tool kit for maagig a escalatig dispute targeted at seior Area admiistratio level (5.9.1). Develop/promulgate a tool to better idetify the patiet s substitute decisio-maker while the patiet still has decisio-makig capacity (5.5.3). Clarify roles of DOH Legal Brach ad the Guardiaship Tribual i EOL coflict with cliicias ad admiistrators (5.7.4, ). Develop educatioal material for a lay audiece o selected EOL issues (e.g. use of cardiopulmoary resuscitatio, or use of artificial hydratio & utritio) or refer developmet of same to a appropriate atioal body (5.7.1, 5.7.2). Develop stadards ad a agreed process for sourcig ad resourcig secod medical opiio as a adjuct to resolvig EOL coflict (5.3.1). Medium term Prioritise commuicatio skills traiig ad related supervisio/metorig for doctors at uder- ad postgraduate levels (5.6.2). Establish routie data collectio o EOL coflict by relevat agecies (5.10.3, ). Cosider implemetig existig tools to better delieate patiet demographics which predict where death is likely i ext 6-12 moths so as to target aticipatory discussios about dyig (5.5.3). Ecourage greater ivolvemet of seior social workers & urses i idetifyig the eed for EOL discussios betwee the treatig teams ad families (5.2.3). Ecourage developmet of local policies ad procedures withi Area Health Services to metor ad support health professioals ivolved i EOL coflict ( ). Determie applicability ad feasibility of facilitated egotiatio as applied to EOL coflict i NSW, i cosultatio with the NSW Health Care Complaits Commissio ( ) ad evaluate a suitable model i practice. Miimise barriers to appoitmet of edurig guardias (5.5.1). Improve commuicatio ad coordiatio of EOL care i the trasitioal settig, i particular for paediatric patiets trasitioig to adult settigs (5.5.5). Loger term Improve access to social workers i areas of eed to facilitate family cofereces & follow up (5.2.4). Improve utilisatio of, ad access to iterpreter services i EOL settigs i NSW public health orgaisatios (5.4.1). Support the developmet of commuicatio skills traiig programs targeted at medical specialties with high cliical iterface with EOL decisios (5.6.1) ad the icorporatio of these programs ito cotiuig educatio i the postgraduate ad professioal settig. Support cultural competecy traiig for health professioals i settigs with sigificat CALD populatios ad frequet EOL treatmet decisios (5.4.2). Establish trasparet processes i Area Health Services for maagig ethical dilemmas i cliical practice, icludig EOL coflict ( ). PAGE 6 NSW Health CRELS Project Workig Group Report

9 Clarify the role ad legal authority of the perso resposible whe a decisio to focus o palliative care is eeded o behalf of a patiet lackig capacity (5.5.4). Recogise, support ad refer the followig priorities for a Australia EOL decisio-makig research ageda (5.4.10): Establishig local best practice i maagig family cofereces i EOL settigs; Effectiveess of secod medical opiio as a adjuct i resolvig EOL coflict; Auditig the NSW experiece i cross-cultural misuderstadigs i EOL settigs; Effectiveess of curret legal mechaisms for resolvig EOL coflict; ad Use ad effectiveess of ethics case cosultatio i NSW public health istitutios where this is curret practice ( ). CRELS Project Workig Group Report NSW Health PAGE 7

10 Figure 1: Resolvig EOL coflicts where the patiet has o decisio-makig capacity This flow chart summarises the process recommeded i this documet. It expads o the process described i the flow diagram i NSW Health Guidelies for ed of life care ad decisio-makig (Appedix 2) at the poit where coflict has bee idetified. Agreemet sought, preferably cosesus, betwee cliical teams re ogoig maagemet & potetial recommedatio to withhold lifesustaiig treatmet (See 4.1) Assess if patiet wishes kow: writte ACD/ACP, verbally expressed Social work +/- Chaplai +/- Iterpreter assistace Medical recommedatio i favour of life-sustaiig treatmet refused by perso resposible Cosider early applicatio to Guardiaship Tribual* for coset or guardia appoitmet where patiet coditio or dispute dyamics warrat this (*ot applicable for childre) Family coferece* regardig decisio to withhold/ withdraw life-sustaiig treatmet: ote role of substitute decisio-maker (SDM) (perso resposible icl. edurig guardia) *See sectio 5.2 No cosesus More time Further discussios by family coferece No cosesus Facilitate obtaiig idepedet expert secod medical opiio *See sectio 5.3 Cosesus Eact agreed care pla re withdrawal or o-provisio of uwated or uwarrated life-sustaiig treatmet Ogoig support for patiet & family Support for cliicias ivolved, especially where care has bee protracted No cosesus Apply Guardiaship Tribual Prepare for hearig & atted Cotiue discussio with SDM & family durig ad after Tribual decisio Eact care pla to comply with Tribual decisio Notify seior hospital admiistratio if ot doe so already Seek legal advice from DOH Legal request triaged via seior Area admiistratio Debriefig/metorig support made available for cliicias ivolved Approach Cliical Ethics Committee/seek advice via cliical ethics case cosult, where available No cosesus Apply Court Cotiue discussio with SDM & family durig ad after Court decisio Comply with decisios of the Court with advice DOH Legal Eact care pla PAGE 8 NSW Health CRELS Project Workig Group Report

11 SECTION 2 Itroductio Ed of life decisios about withholdig or withdrawig life-sustaiig treatmet i dyig patiets are a daily occurrece i hospitals ad other care settigs across NSW. These decisios may be made days, weeks or eve moths before a termial evet i patiets with serious or lifethreateig illess. Most of these are maaged well ad result i a ready agreemet betwee the patiet ad/or their family ad the treatig cliical team as to the best goals of care ad related treatmets. The fact that these, sometimes distressig, decisios result i relatively ifrequet coflicts is a testamet to the skill ad sicere efforts of health professioals as well as the practical wisdom of families. Some ed of life coflicts (EOL coflict) will be uavoidable, eve i the best possible health system ad with impeccable egotiatio o the part of health professioals ivolved. However, a proportio may be avoidable altogether or more readily resolvable, give that a umber of potetially remediable elemets may co-exist i these disputes, ofte aroud miscommuicatio. How ofte do coflicts i ed of life decisios occur? Ufortuately, there is o systematically collected data i NSW, or probably i other Australia jurisdictios. The NSW Health Care Complaits Commissio deals with a very small proportio of EOL coflict as part of their complaits hadlig process, however the Workig Group was uable to idetify ay existig data sources regardig icidece or ature of EOL coflict i the NSW public health system. Noetheless, sigificat adverse impacts associated with these disputes were idetified: Patiets are affected where prologed ad avoidable pai ad sufferig accompay exteded use of lifesustaiig treatmets about which agreemet caot be reached. Families are affected i livig with the death of a loved oe, let aloe dealig with the itese emotios associated with coflict aroud a prior decisio to withhold or withdraw treatmet. Sometimes this effect is profoud ad log-lastig for a life time i some cases. Health professioals are affected. These coflicts geerate sigificat emotioal ad psychological stress, possibly a sese of havig failed families ad/or patiets, ad searchig questios about what could have bee doe differetly or better. Protracted, usuccessful egotiatio about a EOL decisio ca geerate geuie moral distress i attedig health professioals (HPs) where care must cotiue to be provided till a resolutio is foud. 1,2 Where this cotiues for weeks or i some cases moths, this may be far beyod the poit at which HPs believe the patiet is beefitig from that treatmet. Furthermore, the HPs may believe that cotiued treatmet is harmig the patiet, or that cotiuig treatmet i such cases meas deyig treatmet to others who may derive more beefit. Ufortuately, i some cases i NSW these coflicts have bee accompaied by grave physical ad emotioal threats directed at the health professioals ivolved. Fially, the broader health system is affected. There appears to be a widely held apprehesio of becomig embroiled i Court processes ad possibly a reluctace to escalate coflicts where that may result. This is despite less tha 10 ivolvig EOL coflict reachig the Courts (excludig the Guardiaship Tribual) i NSW over the last decade. Noetheless, this fear may be ifluecig a defesive risk maagemet approach to decisios at a cliical ad istitutioal level. It is kow that EOL coflict occur i NSW i several settigs: betwee a competet (or border-lie competet) patiet ad their family ad/or treatig cliicia/s; withi families; withi ad betwee disciplies i health care teams; ad betwee the treatig team ad the family of a patiet who has lost decisio-makig capacity. The Workig Group cosidered issues related to all these cotexts but with most attetio to the latter. 1 Georges JJ, Grypdock M. Moral problems experieced by urses whe carig for termially ill people: a literature review. Nursig Ethics 2002;9(2): Davidso JE, Powers K, Hedayat KM. et al. Cliical practice guidelies for support of the family i the patiet-cetred itesive care uit: America College of Critical Care Medicie Task Force Crit Care Med 2007;35(2): CRELS Project Workig Group Report NSW Health PAGE 9

12 The followig are three examples of poorly resolved ed of life coflicts. Case example 1 Mary is a 82 year old woma who is admitted i advaced real failure. She has diabetes ad ischaemic heart disease ad while receivig haemodialysis suffers a right vetricular myocardial ifarctio. She has a stet ad a temporary pacemaker iserted ad is stabilised i CCU. Several days later while havig a permaet pacemaker iserted, she suffers a stroke. Although she partially regais cosciousess, she is left with difficulty swallowig ad has a asogastric tube iserted. Her real physicia is of the view that dialysis should ot be cotiued at this poit ad that comfort care measures should ow become the focus. He raises this with the treatig cardiologist who disagrees ad is adamat that maiteace dialysis should cotiue ad that CPR should be provided if she deteriorates. The cardiologist emphasises her stable cardiac fuctio i coversatio with Mary s family. Case example 2 David is a 8 year old child with a termial brai tumour. He has bee sick for a year itermittetly, havig goe through two operatios ad a umber of rouds of chemotherapy. He has ow bee admitted to hospital with icreasig drowsiess, loss of appetite ad difficulty walkig. His parets, Hele ad James, wat all treatmets provided to David, icludig resuscitatio i the evet of respiratory ad/or cardiac arrest. His treatig doctors meet with them ad advise them agaist resuscitatio, sayig that they believe he is ow dyig. David s coditio cotiues to deteriorate over the ext several days ad he is ow ucoscious with laboured breathig. James ad Hele have met with the treatig doctors each day but cotiue to isist o resuscitatio ad that, if successful, David should be admitted to the ICU ad vetilated. They say that they are ot ready to accept that he is dyig ad that a miracle might occur to cure the cacer. Case example 3 Brett is a 29 year old ma who has sustaied severe head ijuries ad a high cervical spial ijury i a motor vehicle accidet. He is ucoscious, sedated ad o a vetilator i the itesive care uit (ICU). Over the ext 24 hours the pressure iside his brai rises to very high levels. The followig day the treatig itesive care doctor holds a family coferece with his parets ad brother advisig them that Brett s coditio is worseig ad that he expects further deterioratio. His family is uderstadably upset ad a pla is made to cotiue treatig ad observig him over the ext 24 hours. Social work ad chaplaicy support are provided. Two days after his admissio to ICU, aother family coferece is held where the ICU doctor iforms the family that, give his coditio ad progosis, cosideratio should ow be give to withdrawig the vetilator ad other life-supports. The family is advised that all doctors ivolved i Brett s care (eurology, spial ad itesive care) agree that it ow appears likely he will ot survive, eve with all aggressive treatmet provided. The family is very distressed ad his father, Harry becomes agry ad hostile towards the doctor. A decisio is made to cotiue treatmet for aother 48 hours to give the family more time to come to terms with the situatio. Daily family cofereces are held over the ext 6 days but o cosesus is reached ad Brett s coditio shows o sigs of improvemet. Over that time, the treatig doctors cosult spial ad itesive care specialists beyod the hospital who agree that death is highly probable ad, if he survives, he will likely be a high quadriplegic i a comatose state. This iformatio is coveyed to the family. Harry remais aggressively opposed to medical opiio ad makes threats about what he d do to himself ad treatig health professioals if treatmet is withdraw. PAGE 10 NSW Health CRELS Project Workig Group Report

13 SECTION 3 Backgroud NSW Health recogised the complex challeges i ed of life decisio-makig i the Guidelies for ed of life care ad decisio-makig 1 i Those guidelies provide a policy framework ad recommeded process for health professioals to use i reachig decisios collaboratively with patiets ad families about use of life-sustaiig treatmets at the ed of life. Cosesus, though ot defied i those guidelies, is take i this documet to mea a collective decisio accepted ad supported by all egaged stakeholders, eve where their ow prefereces may differ. Those guidelies iclude referece to a rage of optios for resolvig disputes aroud these decisios: 3.1 Literature review I preparatio for this project, the Departmet commissioed a literature review 9 through the Sax Istitute. The Simpso Cetre for Health Services Research at Uiversity of NSW was egaged to produce the review. Some 192 citatios were reviewed ad collated. That literature review Coflict Resolutio i Ed of Life Treatmet Decisios: a Evidece Check Review ca be accessed o the NSW Departmet of Health website at: _coflict_resolutio_pdf.asp Time ad repeat discussio Secod medical opiio Time limited treatmet trial the review ad reegotiatio Facilitatio (by a idepedet third party) Patiet trasfer by agreemet to a willig care provider Applyig to the Guardiaship Tribual for guardiaship orders (i some circumstaces) Legal itervetio Sice release of the Guidelies for ed of life care ad decisio-makig the NSW Health Departmet recogised that more detailed exploratio was appropriate as to the cause, prevetio ad maagemet of ed of life coflicts as they occur i the NSW public health system. Some of the above strategies receive more detailed attetio i this Report. I additio, sice 2000 there have bee a umber of high profile legal cases ivolvig EOL coflict i paediatric ad adult settigs here ad overseas that have illumiated the issues ad cocers with EOL decisio-makig i cliical care settigs. 2,3,4,5,6,7,8 1 NSW Health Guidelies for ed-of-life care ad decisio-makig, March Northridge v Cetral Sydey Area Health Service [2000] 50 NSWLR AN NHS Trust ad MB ad ORS [2006] EWHC 507 (Fam) 4 Huter Area Health Service v Marchlewski & Aor [2000] NSWCA 294 (26 October 2000) 5 Iquest ito the death of Paulo Melo [2008] NTMC Isaac Messiah (by tutor Magdy Messiha) v South East Health (2004) NSWSC 1061 (11 November 2004) 7 Krommydas v Sydey West Area Health Service [2006] NSWSC Wyatt [No3] [2005] EW HC 693 (Fam) 21 April 2005 The review outlied potetial itervetios where some evidece of efficacy exists. Importatly, it idetified a geeral lack of empirical data to support most widely used or recommeded itervetios to miimise ad maage EOL coflict. There was virtually o Australia research data i this area. This probably reflects that maagig coflict does ot readily led itself to rigorous testig usig covetioal research methodologies but raises difficulties for local practice improvemet. However, i summary, that review idetified potetially useful strategies as beig: Greater uptake of advace care plaig ad clear access to such plas; Commuicatios traiig for health professioals & stadardised approaches to family cofereces; Earlier palliative ivolvemet, ad developmet ad rollout of state-wide ed of life care plas; Early idetificatio of patiets with a high likelihood of dyig; Ethics cosultatios ad their use ad limitatio; Exteral mediatio by expert, idepedet mediators; Legal aveues for resolutio, icludig Tribuals; ad Commetary as to egagig society about optios ad expectatios aroud ed of life issues Hillma K. ad Che J. (2008), Coflict resolutio i ed of life treatmet decisios: A evidece check review brokered by the Sax Istitute for the NSW Departmet of Health, NSW Departmet of Health, Hillma K, Che J. op cit CRELS Project Workig Group Report NSW Health PAGE 11

14 Over the last 2 decades, the US experiece i policy developmet i this area has provided some salutatory lessos. The first geeratio of policy i that coutry ad ethical discourse at that time was characterised by sigificat, but usuccessful attempts to defie medical futility o various cliical criteria. 11,12,13,14,15 As these disputes are ofte about family demads for doctors to do everythig but which health professioals believe to be futile, it was hoped that developig medical futility guidelies would allow health professioals to discer which treatmets were futile, ad which may the be lawfully ceased, eve or especially i the face of family demads. Based o the backgroud, NSW Health decided to review its strategies to reduce the risk of coflict ad to optimise patiet ad family ad staff satisfactio aroud this critical ed of life decisio makig. This Coflict Resolutio i Ed of Life Settig Project icluded the establishmet of a expert workig group. 3.2 Coflict Resolutio i Ed of Life Settigs Project: Terms of Referece The NSW Health Coflict Resolutio i Ed of Life Settigs (CRELS) Workig Group was costituted to: The secod geeratio respose over the last 5-10 years has shifted to a more procedural approach where fair process guidelies have empowered some hospitals, through their cliical ethics committees ad i some states with legislative support, to decide whether itervetios demaded by families were futile. 16,17 These processes iclude recourse to the Courts where disset persists. Numerous problems exist with these approaches 18 but a fudametal problem is that i both the US ad Australia, there is ogoig debate with o atioal cosesus about what costitutes beeficial treatmet, its limits, ad thus futile treatmet. There is ow a emergig focus i the US o better commuicatio ad shared decisio-makig at the bedside as the way to resolve EOL coflict. While a small proportio of cases will always eed resolutio i the Courts, this emphasis i maagig ed of life coflicts is already part of the ladscape of cliical practice i EOL settigs i Australia ad cotiues to be strogly edorsed i existig NSW Health policy. 1. Cosider issues i relatio to coflict i ed of life decisio-makig ad its resolutio icludig: Relevat differeces as to the icidece ad ature of EOL coflict betwee paediatric ad adults settigs; Available evidece regardig cotributig factors icludig cultural, religious ad socioecoomic factors; Available evidece regardig efficacy of prevetative ad direct itervetios; Potetial applicability of these or other measures i the NSW health system; ad Idetificatio of areas where further cosultatio ad ivestigatio may be required. 2. Develop recommedatios, ad their prioritisatio, regardig appropriate strategies/itervetios to address coflict i ed of life settigs i the NSW public health system. 3.3 Coflict Resolutio i Ed of Life Settigs Project: Process 11 Scheiderma LJ, Jecker NS, Jose AR. Medical Futility: Respose to Critiques. Aals of Iteral Medicie 1996;125(8): Youger SJ. Medical Futility. Critical Care Cliics Jauary 1996;12(1): Capla AL. Odds ad Eds: Trust ad the Debate over Medical Futility. Aals of Iteral Medicie 1996;125(8): Latos J. Whe parets request seemigly futile treatmet for their childre, The Mout Siai Joural of Medicie May 2006;73 (3): Helft PR. et al.the rise ad fall of futility movemet. NEJM July 2000;343(4): Okhuyse-Cawley R. et al. Istitutioal policies o determiatio of medically iappropriate itervetios: Use i five pediatric patiets. Pediatric Critical Care Medicie 2007;8(3): Truog RD. Tacklig Medical Futility i Texas. NEJM 2007;357(1): Wojtasiewicz ME. Damage Compouded: Disparities, Distrust, ad Disparate Impact i Ed-of-Life Coflict Resolutio Policies. America Joural of Bioethics 2006:6(5): Burs PB, Truog RD. Futility: A Cocept i Evolutio. Chest December 2007;132 (6): Davidso JE, Powers K, op cit The CRELS project was established i March 2009 icludig a expert Workig Group (membership at Appedix 3). Nursig ad commuity perspectives were sought through other mechaisms rather tha omiatig a sigle represetative to the Workig Group. This approach was adopted because the spectrum of care settigs i which ed of life coflicts occur meat that garerig a rage of ursig ad commuity perspectives was eeded. The Workig Group s deliberatios were assisted by a series of cosultatio meetigs betwee Workig Group members, Secretariat ad a rage of health ad other professioals ad commuity members. A idepedet facilitator was egaged to ru the commuity ad ursig PAGE 12 NSW Health CRELS Project Workig Group Report

15 meetigs. The Workig Group directly met with, or received feedback from: Seior social workers from Liverpool, Westmead ad Westmead Childre s Hospitals ad elsewhere i SSWAHS, i particular i relatio to issues with patiets or families from culturally ad liguistically diverse (CALD) commuities; Doctors who respoded to ope ivitatio via GMCT etworks. Specialist expertise icluded disability care, trasitioal care, real, respiratory, rehabilitatio medicie ad geriatrics; Professor Malcolm Fisher AO, Cliical Professor i Itesive Care Medicie i the Departmets of Medicie ad Aaesthesia at the Uiversity of Sydey. Nurses i respose to ope ivitatio exteded via the Office of the Chief Nursig Officer to all Area Directors of Nursig & Midwifery. More tha 40 urses respoded, pricipally Cliical Nurse Cosultats ad Nurse Maagers with expertise i palliative care, chroic ad aged care, stroke care, demetia care, trasitioal care, discharge plaig, acute medical ad surgical care, ICU, ad real services; Associate Professor Camero Stewart, Director of the Cetre for Health Goverace, Law ad Ethics, Sydey Law School, Uiversity of Sydey; The Pam McLea Commuicatio Cetre, Norther Cliical School at Uiversity of Sydey i relatio to medical commuicatio skills traiig; Academics ad iterpreters from the Iterpretig ad Traslatio College Research Group, School of Humaities ad Laguages, Uiversity of Wester Sydey (Bakstow) i relatio to medical iterpretig; ad A small group of commuity members who voluteered i respose to ivitatio via the 'Family Advisory Group' at Childre s Hospital Westmead, the Paret ad Cosumer Coucil at Sydey Childre s Hospital, ad SESIAHS Advace Care Plaig Group ad related commuity etwork. These iformal targeted cosultatios, while raisig recurrig themes ad cocers, were ot a proxy for qualitative research ad must therefore be cosidered accordigly. I particular, it was ot possible to comprehesively elicit commuity perspectives about EOL coflict withi the project s resources. Those perspectives, especially those withi culturally ad liguistically diverse (CALD) groups, warrat further ivestigatio. The CRELS Report was dissemiated widely from May to Jue 2010 for commet. Forty ie resposes were received. See p.55 for Cosultatio Summary. CRELS Project Workig Group Report NSW Health PAGE 13

16 SECTION 4 Factors Cotributig to Ed of Life Coflicts Broad ragig factors, may of them iter-depedat, were idetified as cotributig to ed of life coflicts i NSW. These are schematically represeted i Appedix 1. Some of these are societal issues beyod the health system ad, as such, are difficult to ifluece ad chage. Others relate to prevailig orms, practices, systems ad values withi our health system as well as idividuals resposes to dyig, grief ad loss. It is probable that multiple factors co-exist to shape ad drive these disputes wheever they occur. O examiig this area, it became clear that these coflicts illumiate may of the challeges i providig ed of life care geerally, for example the eed for soud approaches to substitute decisio-makig. Moreover, these coflicts seem to offer a widow ito may broader health system cocers beyod EOL care, for example challeges i achievig effective commuicatio betwee care teams, cotiuity of care across settigs, shiftig roles ad resposibilities of health professioals, cultural competecy cocers, ad sometimes urealistic commuity expectatios about what medicie ca achieve ad how these play out i cliical iteractios. The Workig Group s deliberatios were prefaced with the assumptio, accepted i most Wester health systems i regards to ed of life care, that withholdig or withdrawal of life-sustaiig treatmet is a legitimate course of actio (subject to the particulars of each case). This may ot be shared by all cultures or religios. Lack of local data about ed of life coflicts A prelimiary issue for the Workig Group was the iability to quatify through ay existig NSW data collectios how ofte EOL coflicts occur overall, the severity of them, what proportio become high level coflicts requirig itervetios beyod direct egotiatio betwee doctors ad families, or the dyamics ivolved. Defiig ed of life coflict Aother prelimiary issue was how to defie EOL coflicts. This Report has adopted a broad defiitio of EOL coflict beig where disagreemet has occurred as to the goals of care or treatmet decisios ad where such coflict is ot resolved by usual recourse to time ad further discussio. Potetial ambiguities i how much time eeds to lapse ad how may repeat discussios should traspire before a impasse with a family should be defied as a coflict may complicate potetial future data collectio i this area. Use of the term family Frequet referece is made i this Report to family i decisio-makig coflicts. This is ot to discout the primacy of patiets decidig for themselves about the use of life-sustaiig treatmets at the ed of life whe they have the capacity to do so. 1 Coflicts do arise i this situatio, but are rarer tha where the perso ca o loger decide ad their family takes o the matle of decidig o their behalf i cojuctio with the treatig team. The term family is defied i the Glossary ad is ot meat to be limited to blood relatives but also icludes those idividuals that the patiet cosiders family or those that the patiet would wish to be ivolved i decisiomakig about their care. This is distict from the cosetig role of the perso resposible. Coflict betwee the patiet ad treatig doctor/s Coflicts about ed of life decisios betwee the patiet ad his or her treatig doctor/s are less frequet tha those that are the primary focus of this Report, those beig betwee a icompetet patiet s family ad the treatig team. Where coflict arises i the care of termially ill patiets it is critically importat to establish whether the patiet is competet as it is widely recogised i ethics, law ad cliical practice that a patiet with capacity may make treatmet choices to refuse or to request ay therapy, cosistet with his or her ow values, eve where these choices ad values differ from those of the treatig team. While the law assumes that adult patiets are competet to make decisios regardig their ow care, where there is ay 1 NSW Health Guidelies for ed-of-life care ad decisio-makig, March 2005 PAGE 14 NSW Health CRELS Project Workig Group Report

17 doubt that the patiet has sufficiet decisio-makig capacity, their decisio-makig capacity should be assessed accordig to established guidelies ad the results of this assessmet documeted i the patiet s records. 2 I the settig of critical illess, the treatig cliicia should cosider that some chroic or acute illess such as sepsis, sedative drugs, delirium, pai, metal illess, or demetia might adversely impact a perso s decisio-makig capacity. Where decisio-makig capacity is impaired, reasoable efforts should be take to maximise his or her capacity to participate i decisios. Provided this is ot harmful to the patiet, this might iclude treatig ay active ifectios, providig adequate aalgesia, ceasig ay medicatios that may be impairig the patiet s decisio-makig capacity ad coductig discussios i a quiet ad calm eviromet. Such efforts may improve the patiet s ability to participate i discussios Coflicts withi the Health Care Team Coflicts about withholdig or withdrawal of life-sustaiig treatmet ca occur withi ad betwee treatig teams ad may be geerated by several factors icludig: Geuie cliical disagreemet about progosis, chace of treatmet success, ad how that should be defied; Cross-cultural differeces betwee cliicias from differet cultural backgrouds that may ifluece willigess or uwilligess to support treatmet limitatio i their patiets; Potetial reluctace to have difficult discussios about dyig as a result of differig persoal commuicatio styles ad skills; Persoal (perhaps religious) values ad beliefs that may ifluece a cliicia s ethos of ed of life care; ad Differet cultures withi medical specialties that may geerate diverget views about aggressive treatmet ad its appropriateess at the ed of life. Especially where there are multiple teams ivolved, it is critical to make efforts to resolve disagreemet about a patiet s progosis ad appropriate EOL care, ad preferably achieve a cliical cosesus, before opeig a discussio with a patiet s family about limitatio of life- sustaiig treatmet. There is a tesio that emerges betwee, o the oe had, ot stiflig geuie cliical disagreemet betwee cliicias ad, o the other, the eed for all treatig doctors to abide by a reasoable cliical cosesus ad ot give mixed, eve cotradictory iformatio to a family. Providig specialty-specific iformatio i isolatio from other treatig cliicias rus this risk. Gettig progostic agreemet however, is ot always easy. Progosticatio is ot a precise sciece, eve if better tools were available to aid i the task. As i ay iter-persoal disagreemet whe idividuals are challeged, persoal resposes ca close commuicatio dow, makig itra-team EOL coflict sometimes as difficult to egotiate as it ca be with families. Eve where a cliical cosesus has bee established about a appropriate directio of EOL care, this is ot the same as certaity of cliical outcome. This ca preset challeges i egotiatig decisios with families 4 who will ofte, uderstadably, seek assurace ad certaity that survival ad recovery is ot possible. A importat demarcatio i this Report is separatig a secod opiio sought betwee colleagues to clarify the progosis for treatig cliicias from a secod opiio sought to resolve coflict with families. This use of a secod medical opiio i the latter circumstace as a circuit breaker is discussed further i Sectio Commuicatio problems Eve impeccable efforts at egotiatio may sometimes fail & there will be a small proportio of cases where, despite best efforts, the coflict will escalate, potetially to the Courts. However, commuicatio breakdow is probably the most importat cotributig factor i EOL coflict, especially coflicts betwee the treatig team ad family. It ca be both the precipitatig evet for a coflict, or the fial pathway through which a loss of trust i those tryig to egotiate a EOL decisio is expressed by a family. Where trust is lost, the likelihood of egotiatig a agreemet rapidly dimiishes. 5 The applicability of mediatio, i particular a facilitated egotiatio model, was cosidered i this cotext, icludig where commuicatio has sigificatly broke 2 Attorey Geeral s Departmet, NSW Govermet, Capacity Toolkit: Iformatio for govermet ad commuity workers, professioals, families ad carers i New South Wales, Jue NSW Health GL2008_018, Decisios relatig to No Cardio-Pulmoary Resuscitatio Orders, Aldridge M, Barto E. Establishig Termial Status i Ed-of-Life Discussios. Qualitative Health Research Sept 2007;17(7): Capla AL. Odds ad Eds: Trust ad the Debate over Medical Futility. Aals of Iteral Medicie 1996;125(8): CRELS Project Workig Group Report NSW Health PAGE 15

18 dow. There are umerous models of mediatio, 6 may of which are usuitable to this cotext. The use of mediatio i EOL decisios poses some specific difficulties compared to its use i other areas, however facilitated egotiatio warrats further ivestigatio, triallig ad evaluatio as a adjuct to resolvig EOL coflict. This is discussed i more detail i A umber of issues relatig to commuicatio were idetified ad are discussed i the followig sub-sectios Impact of early miscommuicatio A early misuderstadig, a persoality clash, or a previous bad experiece with the health system (their ow or someoe else s) ca geerate early mistrust i patiets ad families. This ca be exacerbated as health professioals sese tesio or hostility ad become reluctat to commuicate with that family, further fuellig commuicatio difficulties. Establishig good commuicatio early is importat Discomfort with difficult discussios There ca be avoidace of difficult coversatios where ager or strog opposig views are aticipated, where there has bee prior disagreemet, ad especially if health professioals feel iadequately skilled i havig those coversatios. This may further fuel tesios ad mistrust Sublimial messages Sublimial messages are preset i all commuicatio, icludig betwee health professioals ad families. Where parties (either health professioals or families) become frustrated, appear to have stopped listeig, or have become itrasiget whe a cosesus decisio remais elusive, despite best efforts at ope dialogue, this will impede reachig a cosesus decisio Mixed messages to families from cliical teams Mior variatios i how a patiet s progosis is described to a family may erroeously soud like differeces i cliical opiio. Certaily real divergece i cliical opiio betwee treatig specialists has the potetial for cofusio o the family s part. Whe this occurs, may families will uderstadably hag o to the most positive cliicia s viewpoit. These mixed messages, iteded or otherwise, durig icidetal coversatios or durig formal family cofereces, were thought to be a commo cotributor to EOL coflicts. Where laguage is softeed, for example i use of euphemisms to lesse distress or otherwise create a positive sese from iformatio eve whe its bad ews, this ca be misiterpreted by patiets or families as differet diagostic/progostic iformatio. 7 That health professioals sig from the same sog sheet whe discussig EOL decisios with families was widely supported. I additio, social workers ad urses play a importat role i supportig ad updatig families ad also moitorig betwee family cofereces as to that family s uderstadig ad levels of agreemet. Nurses ivolvemet i EOL discussios is sometimes compromised by workload commitmets makig them uavailable durig ward rouds or other discussio time poits. However, their ivolvemet is importat, amog other reasos, to esure that cosistet iformatio is give to families Family feelig pressured ad/or rushed There is probably a wide disparity betwee health professioals ad the commuity perceptios as to what is a reasoable timeframe to allow a family to recogise that it might be time to cease life-sustaiig treatmet i a deterioratig or dyig patiet. Health professioals may seek very short timeframes for agreemet to withdraw lifesustaiig treatmet, such as withi 24 hours, eve where the patiet s cliical demise may still allow somewhat more time for decisio-makig with a family. Rushig idividuals i this situatio will likely add to ager, mistrust ad may result i resistace. Whe families are fearful that withdrawal of life-sustaiig treatmet is beig cosidered, ad/or they feel they are beig pressured for decisios, some will simply stop attedig family cofereces where these decisios might be made Idividualised iformatio Provisio of iformatio that is meaigful ad meets the eeds of families to assist i decisio-makig aroud treatmet limitatio is importat. Idividuals may eed additioal, more detailed, or a differet form of iformatio ad some vary i their preferece for verbal, writte or visual sources. It is therefore importat to clarify with the patiet ad key family members about their prefereces ad to tailor iformatio accordigly. If there are special prefereces for iformatio provisio this should be clearly documeted i the medical records ad commuicated to 6 Astor H, Chiki C. Dispute Resolutio i Australia. 2d editio, Butterworths, Sydey, Philip J, Gold M. Uses ad misuses of ambiguity: Misuses of ambiguity. Iteral Medicie Joural 2005;35: PAGE 16 NSW Health CRELS Project Workig Group Report