Treatment and care towards the end of life · Patients must be able to trust doctors with their lives and health. To justify that trust you must show respect for human life and you

Treatment and care towards the end of life:good practice in decision making

Guidance for doctors

Patients must be able to trust doctors with their lives and health. To justify that trust you must show respect for human life and you must:

Make the care of your patient your first concern Protect and promote the health of patients and the public Provide a good standard of practice and care

- Keep your professional knowledge and skills up to date - Recognise and work within the limits of your competence - Work with colleagues in the ways that best serve patients’ interests

Treat patients as individuals and respect their dignity - Treat patients politely and considerately - Respect patients’ right to confidentiality

Work in partnership with patients - Listen to patients and respond to their concerns and preferences - Give patients the information they want or need in a way they

can understand - Respect patients’ right to reach decisions with you about their

treatment and care - Support patients in caring for themselves to improve and maintain

their health Be honest and open and act with integrity

- Act without delay if you have good reason to believe that you or a colleague may be putting patients at risk

- Never discriminate unfairly against patients or colleagues - Never abuse your patients’ trust in you or the public’s trust in

the profession.

You are personally accountable for your professional practice and must always be prepared to justify your decisions and actions.

The duties of a doctor registered with the General Medical Council

Treatment and care towards the end of life: good practice in decision making

01 General Medical Council

Published 20 May 2010

Comes into force 1 July 2010


Treatment and care towards the end of life: Good practice in decision making

General Medical Council02

Paragraph(s) Pages

About this guidance 06

Howthisguidanceappliestoyou 07

Guidance 1-6 08

Principles 7-13 11

Equalitiesandhumanrights 7-9 11

Presumptioninfavourofprolonginglife 10 12

Presumptionofcapacity 11 12

Maximisingcapacitytomakedecisions 12 13

Overallbenefit 13 13

Decision-making models 14-16 14

Patientswhohavecapacitytodecide 14 14

Adultswholackcapacitytodecide 15-16 15

Working with the principles and

decision-making models 17-89 20

Roleofrelatives,partnersandothers

closetothepatient 17-21 20

Workinginteamsandacrossservice

boundaries 22-23 21

Makingsoundclinicaljudgements 24-27 22

Explainingtheclinicalissues 28-30 24

Addressinguncertainty 31-32 25

Emotionaldifficultiesinendoflife

decisionmaking 33-36 25

Resourceconstraints 37-39 26

Assessingtheoverallbenefitoftreatment

options 40-46 28

Contents




Paragraph(s) Pages

Weighingthebenefits,burdens

andrisks 40-43 28

Avoidingbias 44-46 29

Resolvingdisagreements 47-49 30

Advancecareplanning 50-62 31

Thebenefits 50-51 31

Whattodiscuss 52-55 31

Whenpatientsdonotwanttoknow 56-58 33

Whenotherswantinformationtobe

withheldfromthepatient 59 34

Formalisingapatient’swishes 60 34

Recordingandsharingtheadvancecareplan 61-62 35

Actingonadvancerequestsfortreatment 63-66 35

Actingonadvancerefusalsoftreatment 67-74 36

Whenadvancerefusalsarebinding 68 37

Non-bindingadvancerefusals 69 37

Assessingthevalidityofadvancerefusals 70 38

Assessingtheapplicabilityofadvancerefusals 71 39

Doubtordisagreementaboutthestatus

ofadvancerefusals 72-74 39

Recordingandcommunicatingdecisions 75-77 40

Reviewingdecisions 78 41

Conscientiousobjections 79-80 41

Organdonation 81-82 42




Paragraph(s) Pages

Careafterdeath 83-87 42

Thewishesandneedsofthebereaved 84 43

Certification,post-mortemsandreferral

toacoronerorprocuratorfiscal 85-87 43

Trainingandaudit 88-89 44

Neonates, children and young people 90-108 45

Consideringthebenefits,burdensand

risksoftreatment 92-96 45

Makingthedecision 97-98 47

Childrenandyoungpeoplewhohave

capacity 99-103 47

Childrenandyoungpeoplewholack

capacity 104-105 49

Neonatesandinfants 106 50

Parents’concernsandanxieties 107 51

Resolvingdisagreements 108 51

Meeting patients’ nutrition and hydration

needs 109-111 52

Clinically assisted nutrition and

hydration 112-127 54

Patientswhohavecapacity 116-117 55

Adultpatientswholackcapacity 118 56

Adultpatientswholackcapacityandare

notexpectedtodiewithinhoursordays 119-122 57

Adultpatientswholackcapacityandare

expectedtodiewithinhoursordays 123-125 58

Contents (continued)




Paragraph(s) Pages

Patientsinapersistentvegetative

state(PVS)orsimilarcondition 126 59

Conscientiousobjection 127 59

Cardiopulmonary resuscitation (CPR) 128-146 60

WhentoconsidermakingaDoNot

AttemptCPR(DNACPR)decision 129-131 60

Discussionsaboutwhetherto

attemptCPR 132-133 62

WhenCPRwillnotbesuccessful 134-136 62

WhenCPRmaybesuccessful 137-141 63

Patientswhohavecapacity 137-139 63

Patientswholackcapacity 140-141 65

Resolvingdisagreements 142 66

Recordingandcommunicating

CPRdecisions 143 66

TreatmentandcareafteraDNACPR

decision 144-145 66

EmergenciesandCPR 146 67

References 68

Legal Annex 76

Endnotes for Legal Annex 83

Glossary of terms 85




TheGeneralMedicalCouncil(GMC)isthestatutoryregulatorforthemedical

professionintheUK,andthisguidanceappliestodoctorsworkinginallfourUK

countries.

Thisguidanceisbasedonlong-establishedethicalprinciples,whichinclude

doctors’obligationstoshowrespectforhumanlife;toprotectthehealthof

patients;totreatpatientswithrespectanddignity;andtomakethecareoftheir

patientstheirfirstconcern.Itexpandsontheprinciplesofgoodpracticeinthe

GMC’sGood Medical Practice(2006)andConsent: patients and doctors making

decisions together(2008),andreplacesthebookletWithholding and Withdrawing

Life-Prolonging Treatments(2002).

Thisguidancetakesaccountof,andisconsistentwith,currentlawacrossthe

UK,includingthelawsondecisionmakingforpatientswholackcapacity(the

Adults with Incapacity (Scotland) Act 2000andtheMental Capacity Act 2005);

thelawprohibitingkilling(includingeuthanasia)andassistingsuicide;andthe

requirementsoftheHuman Rights Act 1998.However,itisnotintendedasa

statementofthelegalprinciplesorasubstituteforlegaladvice.Doctorsmustseek

up-to-dateadvicewhenthereisuncertaintyabouthowaparticulardecisionmight

beviewedinlaw,inthejurisdictioninwhichtheypractise.

Thisguidanceisaddressedtodoctors.However,itmayalsohelppatientsandthe

publictounderstandwhattoexpectoftheirdoctors,incircumstancesinwhich

patientsandthoseclosetothemmaybeparticularlyvulnerableandinneedof

support.Othermembersofthehealthcareteammayalsobenefitfromit,given

theircrucialroleindeliveringendoflifecare.

About this guidance



Thisguidancecanbereadonourwebsite,wheretheonlineversioncontainslinks

tothedocumentsreferencedinthetext,footnotes,references,endnotesandlegal

annex.AllGMCguidancedocumentscanbereadonourwebsite:www.gmc-uk.org

How this guidance applies to you

Inthisguidancetheterms‘youmust’and‘youshould’areusedinthefollowing

ways:

n ‘youmust’isusedforanoverridingdutyorprinciple

n ‘youshould’isusedwhenweareprovidinganexplanationofhowyouwill

meettheoverridingduty

n ‘youshould’isalsousedwherethedutyorprinciplewillnotapplyinall

situationsorcircumstances,orwheretherearefactorsoutsideyourcontrol

thataffectwhetherorhowyoucancomplywiththeguidance.

Thefootnotes,references,endnotesandlegalannexareintendedonlytoprovide

informationthatmaybehelpfuladditionalbackground.Referencestopublications

byotherorganisationsareintendedonlyasexamplesofavailablenationalresources.

Thisguidanceisnot,andcannotbe,exhaustive.Soyoushoulduseyourown

judgementtoapplytheprinciplesitsetsouttothesituationsyoufaceinyour

ownpractice.

Seriousorpersistentfailuretofollowthisguidancewillputyourregistrationatrisk.

Youmust,therefore,bepreparedtoexplainandjustifyyouractions.



1 Patientswhoareapproachingtheendoftheirlifeneedhigh-quality

treatmentandcarethatsupportthemtoliveaswellaspossibleuntil

theydie,andtodiewithdignity.Thisguidanceidentifiesanumberof

challengesinensuringthatpatientsreceivesuchcare,andprovidesa

frameworktosupportyouinaddressingtheissuesinawaythat

meetstheneedsofindividualpatients.Providingtreatmentandcare

towardstheendoflifewillofteninvolvedecisionsthatareclinically

complexandemotionallydistressing;andsomedecisionsmayinvolve

ethicaldilemmasanduncertaintiesaboutthelawthatfurthercomplicate

thedecision-makingprocess.Thisguidanceisintendedtohelpyou,in

whatevercontextyouareworking,toaddresstheseissueseffectively

withpatients,thehealthcareteamandthosewhohaveaninterestinthe

patient’swelfare.Itseekstoensurethatpeoplewhoareclosetothepatient

(partners,family,carersandothers)areinvolvedandsupported,whilethe

patientisreceivingcareandafterthepatienthasdied.

2 Forthepurposesofthisguidance,patientsare‘approachingtheendoflife’

whentheyarelikelytodiewithinthenext12months.Thisincludespatients

whosedeathisimminent(expectedwithinafewhoursordays)andthose

with:

(a)advanced,progressive,incurableconditions

(b)generalfrailtyandco-existingconditionsthatmeantheyareexpected

todiewithin12months

(c)existingconditionsiftheyareatriskofdyingfromasuddenacute

crisisintheircondition

(d)life-threateningacuteconditionscausedbysuddencatastrophicevents.

Guidance



Thisguidancealsoappliestothoseextremelyprematureneonates

whoseprospectsforsurvivalareknowntobeverypoor,andtopatients

whoarediagnosedasbeinginapersistentvegetativestate1(PVS),for

whomadecisiontowithdrawtreatmentmayleadtotheirdeath.

3 Themostchallengingdecisionsinthisareaaregenerallyaboutwithdrawing

ornotstartingatreatmentwhenithasthepotentialtoprolongthe

patient’slife.Thismayinvolvetreatmentssuchasantibioticsforlife-

threateninginfection,cardiopulmonaryresuscitation(CPR),renaldialysis,

‘artificial’nutritionandhydration(forthepurposeofthisguidance

‘artificial’isreplacedby‘clinicallyassisted’2)andmechanicalventilation.

Theevidenceofthebenefits,burdensandrisksofthesetreatmentsisnot

alwaysclearcut,andtheremaybeuncertaintyabouttheclinicaleffectofa

treatmentonanindividualpatient,orabouttheparticularbenefits,burdens

andrisksforthatpatient.Insomecircumstancesthesetreatmentsmayonly

prolongthedyingprocessorcausethepatientunnecessarydistress.Given

theuncertainties,youandothersinvolvedinthedecision-makingprocess

mayneedreassuranceaboutwhatisethicallyandlegallypermissible,

especiallywhendecidingwhethertowithdrawapotentiallylife-prolonging

treatment.

4 Inadditionitisnowwidelyagreedthathigh-qualitytreatmentandcare

towardstheendoflifeincludespalliativecarethatfocusesonmanaging

painandotherdistressingsymptoms;providingpsychological,socialand

1 Persistentvegetativestateisalsoreferredtoas‘permanentvegetativestate’.

2 ‘Artificialnutritionandhydration’isthephrasesometimesusedinhealthcaresettings.However, webelievethat‘clinicallyassistednutritionandhydration’isamoreaccuratedescriptionoftheuseofadrip, anasogastrictubeoratubesurgicallyimplantedintothestomach,toprovidenutritionandfluids.



spiritualsupporttopatients;andsupportingthoseclosetothepatient.

However,itisnotalwaysrecognisedthatpalliativecarecanbeprovidedat

anystageintheprogressionofapatient’sillness,notonlyinthelastfew

daysoftheirlife.

5 Theframeworkfordecisionmakingincaretowardstheendoflifeis

essentiallythesameasforanyotherphaseofclinicalcare.Theprinciples

ofgooddecisionmakingforallstagesofcarearesetoutinConsent:

patients and doctors making decisions together.Whenanissueinthis

guidanceiscoveredinmoredetailinConsent,thisisindicatedinthetext.

6 Itisimportanttonotethatweusetheterm‘overallbenefit’todescribe

theethicalbasisonwhichdecisionsaremadeabouttreatmentandcare

foradultpatientswholackcapacitytodecide.GMCguidanceonoverall

benefit,appliedwiththedecision-makingprinciplesinparagraphs7-13,is

consistentwiththelegalrequirementtoconsiderwhethertreatment

‘benefits’3apatient(Scotland),orisinthepatient’s‘bestinterests’4

(England,WalesandNorthernIreland),andtoapplytheotherprinciples

setoutintheMental Capacity Act 2005andAdults with Incapacity

(Scotland) Act 2000.

3 ‘Benefit’assetoutinthe Adults with Incapacity (Scotland) Act 2000.

4 ‘Bestinterests’assetoutinthe Mental Capacity Act 2005 (inEnglandandWales)andcommonlawin NorthernIreland.



Equalities and human rights

7 Youmustgivepatientswhoareapproachingtheendoftheirlifethesame

qualityofcareasallotherpatients.Youmusttreatpatientsandthoseclose

tothemwithdignity,respectandcompassion,especiallywhentheyare

facingdifficultsituationsanddecisionsaboutcare.Youmustrespecttheir

privacyandrighttoconfidentiality.

8 Somegroupsofpatientscanexperienceinequalitiesingettingaccessto

healthcareservicesandinthestandardofcareprovided.Itisknownthat

someolderpeople,peoplewithdisabilitiesandpeoplefromethnic

minoritieshavereceivedpoorstandardsofcaretowardstheendoflife.

Thiscanbebecauseofphysical,communicationandotherbarriers,and

mistakenbeliefsorlackofknowledgeamongthoseprovidingservices,

aboutthepatient’sneedsandinterests.Equalities,capacityandhuman

rightslawsreinforceyourethicaldutytotreatpatientsfairly.

9 Ifyouareinvolvedindecisionsabouttreatmentandcaretowardstheend

oflife,youmustbeawareoftheHuman Rights Act 1998anditsmain

provisions,asyourdecisionsarelikelytoengagethebasicrightsand

principlessetoutintheAct5.

Principles

5 ThelegalannexprovidesanexplanationoftheEuropeanConventionrightswhichareincorporatedintotheAct andwhicharemostrelevanttoendoflifedecisions.



Presumption in favour of prolonging life

10 Followingestablishedethicalandlegal(includinghumanrights)principles,

decisionsconcerningpotentiallylife-prolongingtreatmentmustnotbe

motivatedbyadesiretobringaboutthepatient’sdeath,andmuststart

fromapresumptioninfavourofprolonginglife.Thispresumptionwill

normallyrequireyoutotakeallreasonablestepstoprolongapatient’s

life.However,thereisnoabsoluteobligationtoprolonglifeirrespectiveof

theconsequencesforthepatient,andirrespectiveofthepatient’sviews,if

theyareknownorcanbefoundout.

Presumption of capacity

11 Youmustworkonthepresumptionthateveryadultpatienthasthe

capacitytomakedecisionsabouttheircareandtreatment.Youmustnot

assumethatapatientlackscapacitytomakeadecisionsolelybecauseof

theirage,disability,appearance,behaviour,medicalcondition(including

mentalillness),beliefs,apparentinabilitytocommunicateorbecausethey

makeadecisionthatothersdisagreewithorconsiderunwise.



Maximising capacity to make decisions

12 Ifapatient’scapacitytomakeadecisionmaybeimpaired,youmust

providethepatientwithallappropriatehelpandsupporttomaximisetheir

abilitytounderstand,retain,useorweighuptheinformationneededto

makethatdecisionorcommunicatetheirwishes.Youmustassesstheir

capacitytomakeeachdecision,atthetimeitneedstobemade.You

canfinddetailedguidanceaboutmaximisingandassessingapatient’s

capacityinConsent: patients and doctors making decisions together and

inthecodesofpracticesupportingtheMental Capacity Act 2005 andAdults

with Incapacity (Scotland) Act 20006.

Overall benefit

13 Ifanadultpatientlackscapacitytodecide,thedecisionsyouorothers

makeonthepatient’sbehalfmustbebasedonwhethertreatmentwould

beofoverallbenefittothepatient(seeparagraphs40-46formoreabout

assessingoverallbenefit),andwhichoption(includingtheoptionnot

totreat)wouldbeleastrestrictiveofthepatient’sfuturechoices.Whenyou

areresponsibleformakingthedecisionaboutoverallbenefit,youmust

consultwiththoseclosetothepatientwholackscapacity,tohelpyou

reachaview(seeparagraphs15-16).

6 Informationaboutthislegislation,thesupportingcodesofpracticeandrelatedguidancecanbefoundinthe legalannex.



Patients who have capacity to decide7

14 Ifapatienthascapacitytomakeadecisionforthemselves,thisisthe

decision-makingmodelthatapplies:

(a)Thedoctorandpatientmakeanassessmentofthepatient’scondition,

takingintoaccountthepatient’smedicalhistory,views,experienceand

knowledge.

(b)Thedoctorusesspecialistknowledgeandexperienceandclinical

judgement,andthepatient’sviewsandunderstandingoftheir

condition,toidentifywhichinvestigationsortreatmentsareclinically

appropriateandlikelytoresultinoverallbenefitforthepatient.The

doctorexplainstheoptionstothepatient,settingoutthepotential

benefits,burdensandrisksofeachoption.Thedoctormayrecommend

aparticularoptionwhichtheybelievetobebestforthepatient,but

theymustnotputpressureonthepatienttoaccepttheiradvice.

(c)Thepatientweighsupthepotentialbenefits,burdensandrisksofthe

variousoptionsaswellasanynon-clinicalissuesthatarerelevantto

them.Thepatientdecideswhethertoacceptanyoftheoptionsand,if

so,which.Theyalsohavetherighttoacceptorrefuseanoptionfora

reasonthatmayseemirrationaltothedoctororfornoreasonatall.

(d)Ifthepatientasksforatreatmentthatthedoctorconsiderswouldnot

beclinicallyappropriateforthem,thedoctorshoulddiscusstheissues

withthepatientandexplorethereasonsfortheirrequest.If,after

Decision-making models

7 Additionalconsiderationsapplytochildrenandyoungpeoplewhohavecapacitytodecide– seethesectiononneonates,childrenandyoungpeopleatparagraphs90–108.



discussion,thedoctorstillconsidersthatthetreatmentwouldnotbe

clinicallyappropriatetothepatient,theydonothavetoprovidethe

treatment.Theyshouldexplaintheirreasonstothepatientandexplain

anyotheroptionsthatareavailable,includingtheoptiontoseeka

secondopinionoraccesslegalrepresentation.

Adults who lack capacity to decide8

15 Ifyouassessthatapatientlackscapacitytomakeadecision,youmust:

(a) beclearwhatdecisionsabouttreatmentandcarehavetobemade

(b)checkthepatient’smedicalrecordforanyinformationsuggestingthat

theyhavemadeapotentiallylegallybindingadvancedecisionor

directiverefusingtreatment

(c) makeenquiriesastowhethersomeoneelseholdslegalauthorityto

decidewhichoptionwouldprovideoverallbenefitforthepatient(an

attorneyorother‘legalproxy’9).Youshouldbearinmindthatthe

powersheldbyalegalproxymaynotcoverallhealthcaredecisions,so

youshouldcheckthescopeoftheirdecision-makingauthority10

(d)takeresponsibilityfordecidingwhichtreatmentwillprovideoverall

benefittothepatient,whennolegalproxyexists,andyouarethe

8 Adviceonchildrenwholackcapacityisinthesectiononneonates,childrenandyoungpeople.

9 Legalproxiesinclude:apersonholdingaLastingPowerofAttorney(EnglandandWales)orWelfarePowerof Attorney(Scotland),acourt-appointeddeputy(EnglandandWales)oracourt-appointedguardianor intervener(Scotland).NorthernIrelandcurrentlyhasnoprovisionforappointinglegalproxieswithpower tomakehealthcaredecisions.

10 PowersofattorneymustberegisteredwiththeOfficesofthePublicGuardianinEnglandandWalesand Scotland.Informationisavailableontheirwebsites.Theroleofthevariouslegalproxiesisexplainedinthe codesofpracticethatsupporttherelevantcapacitylaws–seethelegalannex.



doctorwithresponsibilityforthepatient’scare.11Youmustconsult

thoseclosetothepatientandmembersofthehealthcareteamtohelp

youmakeyourdecisions.

16 Takingaccountoftheconsiderationsinparagraph15,thisisthedecision-

makingmodelthatappliesifapatientlackscapacity:

(a) Thedoctor,withthepatient(iftheyareabletocontribute)andthe

patient’scarer12,makesanassessmentofthepatient’sconditiontaking

intoaccountthepatient’smedicalhistoryandthepatientandcarer’s

knowledgeandexperienceofthecondition.

(b)Thedoctorusesspecialistknowledge,experienceandclinical

judgement,togetherwithanyevidenceaboutthepatient’sviews

(includingadvancestatements,decisionsordirectives),toidentify

whichinvestigationsortreatmentsareclinicallyappropriateandare

likelytoresultinoverallbenefitforthepatient.

(c)Ifthepatienthasmadeanadvancedecisionordirectiverefusinga

particulartreatment,thedoctormustmakeajudgementaboutits

validityanditsapplicabilitytothecurrentcircumstances.Ifthedoctor

concludesthatthedecisionordirectiveislegallybinding,itmustbe

followedinrelationtothattreatment.Otherwiseitshouldbetaken

intoaccountasinformationaboutthepatient’spreviouswishes.

(Seeparagraphs67-74onassessingthelegalstatusofadvance

decisionsanddirectives.)

11 Inthesecircumstancesyouwillhavelegalauthoritytomakedecisionsabouttreatment,underthe Adults with Incapacity (Scotland) Act 2000 (subjecttoissuingacertificateofincapacity),orthe Mental Capacity Act 2005 (EnglandandWales),orthecommonlawinNorthernIreland.Seethelegalannex.

12 The‘carer’forthesepurposesmeansthepersonsupportingthepatientandrepresentingtheirinterestsinthe consultationabouttheirhealthandwhatmightbeneededintermsofanyinvestigations,treatmentorcare.



(d)Ifanattorneyorotherlegalproxyhasbeenappointedtomake

healthcaredecisionsforthepatient,thedoctorexplainstheoptionsto

thelegalproxy(astheywoulddoforapatientwithcapacity),setting

outthebenefits,burdensandrisksofeachoption.Thedoctormay

recommendaparticularoptionwhichtheybelievewouldprovideoverall

benefitforthepatient.Thelegalproxyweighsuptheseconsiderations

andanynon-clinicalissuesthatarerelevanttothepatient’streatment

andcare,and,consideringwhichoptionwouldbeleastrestrictiveofthe

patient’sfuturechoices,makesthedecisionaboutwhichoptionwillbe

ofoverallbenefit.Thedoctorshouldoffersupporttothelegalproxyin

makingthedecision,butmustnotpressurisethemtoacceptaparticular

recommendation.

(e)Aswellasadvisingthelegalproxy,thedoctormustinvolvemembers

ofthehealthcareteamandthoseclosetothepatient13asfarasitis

practicalandappropriatetodoso14,astheymaybeabletocontribute

informationaboutthepatientthathelpstheproxytoreachadecision.

Ifthelegalproxydoesnothavethepowertomakeaparticulardecision,

thedoctormusttakeaccountoftheproxy’sviews(assomeonecloseto

thepatient)intheprocessofreachingadecision.

(f) Incircumstancesinwhichthereisnolegalproxywithauthorityto

makeaparticulardecisionforthepatient,andthedoctorisresponsible

formakingthedecision,thedoctormustconsultwithmembersofthe

healthcareteamandthoseclosetothepatient(asfarasitispractical

13 Theterm‘thoseclosetothepatient’meansanyonenominatedbythepatient,closerelatives(includingparentsif thepatientisachild),partnersandclosefriends,paidorunpaidcarersoutsidethehealthcareteamand independentadvocates.Itmayincludeattorneysforpropertyandfinancialaffairsandotherlegalproxies,in somecircumstances.

14 Whoitisappropriateandpracticaltoconsultwilldependon,forexample,apatient’spreviousrequest;what reasonablestepscanbetakentoconsultwithinthetimeavailablebeforeadecisionmustbemade;andanyduty toconsultorprioritisespecificpeoplesetoutinrelevantcapacitylawsorcodes.



andappropriatetodoso)beforereachingadecision.Whenconsulting,

thedoctorwillexplaintheissues;seekinformationaboutthepatient’s

circumstances;andseekviewsaboutthepatient’swishes,preferences,

feelings,beliefsandvalues.Thedoctormayalsoexplorewhichoptions

thoseconsultedmightseeasprovidingoverallbenefitforthepatient,

butmustnotgivethemtheimpressiontheyarebeingaskedtomake

thedecision.Thedoctormusttaketheviewsofthoseconsultedinto

accountinconsideringwhichoptionwouldbeleastrestrictiveofthe

patient’sfuturechoicesandinmakingthefinaldecisionaboutwhich

optionisofoverallbenefittothepatient.

(g)InEnglandandWales,ifthereisnolegalproxy,closerelativeorother

personwhoiswillingorable15tosupportorrepresentthepatientand

thedecisioninvolvesseriousmedicaltreatment16,thedoctormust

approachtheiremployingorcontractingorganisationaboutappointing

anIndependentMentalCapacityAdvocate(IMCA),asrequiredbythe

Mental Capacity Act 2005(MCA).TheIMCAwillhaveauthoritytomake

enquiriesaboutthepatientandcontributetothedecisionby

representingthepatient’sinterests,butcannotmakeadecisionon

behalfofthepatient.

(h)Ifadisagreementarisesaboutwhatwouldbeofoverallbenefit,the

doctormustattempttoresolvetheissuesfollowingtheapproachset

outinparagraphs47-48.

(i) Ifalegalproxyorotherpersoninvolvedinthedecisionmakingasks

foratreatmenttobeprovidedwhichthedoctorconsiderswouldnot

beclinicallyappropriateandofoverallbenefittothepatient,thedoctor

shouldexplainthebasisforthisviewandexplorethereasonsforthe

15 Noone‘willingorable’generallymeanswherethereisnooneclosetothepatienttoconsultorthoseavailable areunableorfeelunabletoparticipateinthedecisionmaking.TheMCACodeofPracticegivesmoreinformation.

16 SeriousmedicaltreatmentisdefinedintheMCACodeofPractice,wheretheroleoftheIMCAisalsosetout.



request.Ifafterdiscussionthedoctorstillconsidersthatthetreatment

wouldnotbeclinicallyappropriateandofoverallbenefit,theyarenot

obligedtoprovideit.However,aswellasexplainingthereasonsfor

theirdecision,thedoctorshouldexplaintothepersonaskingforthe

treatmenttheoptionsavailabletothem.Theseincludetheoptionof

seekingasecondopinion,applyingtotheappropriatestatutorybody

forareview(Scotland),andapplyingtotheappropriatecourtforan

independentruling.



Role of relatives, partners and others close to the patient

17 Thepeopleclosetoapatientcanplayasignificantroleinensuring

thatthepatientreceiveshigh-qualitycareastheyneartheendoflife,

inbothcommunityandhospitalsettings.Manyparents,otherclose

relativesandpartners,aswellaspaidandunpaidcarers,willbeinvolvedin

discussingissueswithapatient,enablingthemtomakechoices,supporting

themtocommunicatetheirwishes,orparticipatingdirectlyintheir

treatmentandcare.Insomecases,theymayhavebeengrantedlegal

powerbythepatient,orthecourt,tomakehealthcaredecisionswhenthe

patientlackscapacitytomaketheirownchoices.

18 Itisimportantthatyouandothermembersofthehealthcareteam

acknowledgetheroleandresponsibilitiesofpeopleclosetothepatient.

Youshouldmakesure,asfaraspossible,thattheirneedsforsupportare

metandtheirfeelingsrespected,althoughthefocusofcaremustremain

onthepatient.

19 Thoseclosetoapatientmaywantorneedinformationaboutthepatient’s

diagnosisandaboutthelikelyprogressionoftheconditionordisease,in

ordertohelpthemprovidecareandrecogniseandrespondtochangesin

thepatient’scondition.Ifapatienthascapacitytomakedecisions,you

shouldcheckthattheyagreetoyousharingthisinformation.Ifapatient

lackscapacitytomakeadecisionaboutsharinginformation,itisreasonable

toassumethat,unlesstheyindicateotherwise,theywouldwantthose

closesttothemtobekeptinformedofrelevantinformationabouttheir

Working with the principles and decision-making models



generalconditionandprognosis.(Thereismoreguidanceinourbooklet

onConfidentiality.)Youshouldcheckwhetherapatienthasnominated

someoneclosetothemtobekeptinformedandconsultedabouttheir

treatment.

20 Whenprovidinginformation,youmustdoyourbesttoexplainclinical

issuesinawaythepersoncanunderstand,andapproachdifficultor

potentiallydistressingissuesaboutthepatient’sprognosisandcarewith

tactandsensitivity.(Seeparagraphs33-36onaddressingemotional

difficultiesandpossiblesourcesofsupport.)

21 Whendiscussingtheissueswithpeoplewhodonothavelegalauthorityto

makedecisionsonbehalfofapatientwholackscapacity,youshouldmake

itclearthattheirroleistoadvisethehealthcareteamaboutthepatient’s

knownorlikelywishes,viewsandbeliefs.Youmustnotgivethemthe

impressiontheyarebeingaskedtomakethedecision.

Working in teams and across service boundaries

22 Mosttreatmentandcareattheendoflifeisdeliveredbymulti-disciplinary

andmulti-agencyteams,workingtogethertomeettheneedsofpatients

astheymovebetweendifferenthealthandsocialcaresettingsand

accessdifferentservices.ThiscanincludeGPpractices,localcarehomes,

pharmacies,hospices,ambulanceservices,localhospitals,andlocal

authorityandvoluntarysectorsupportservices.Youmustcommunicate

effectivelywithothermembersofthehealthandsocialcareteamorteams



involvedinapatient’scare,sharingwiththemtheinformationnecessaryto

providethepatientwithsafe,effectiveandtimelycare.(Seeparagraphs75-

77onrecordingandcommunicatingdecisions.)Whenconsideringoptions

fortreatmentandcare,andreviewingthepatient’sprogress,youshould

consultothermembersoftheteamwhomayhaveinformationaboutthe

patientorrelevantknowledgeandexperiencethatmayhelpinmanagingor

treatingthepatient’scondition.

23 Youmustmakesurethatyouunderstandthescopeandresponsibilitiesof

yourownroleinthehealthcareteam,therolesandspecialistskillsofother

healthandsocialcareteammembers,andthelinesofaccountabilityfor

thepatient’scare.17Youshouldtakestepstoclarifyanyambiguityabout

yourownorothers’responsibilitieswithyouremployingorcontracting

organisationifyouhaveconcernsthattheambiguitymaycompromise

patientsafety.18

Making sound clinical judgements

24 Thestartingpointforreachinggooddecisionsiscarefulconsiderationof

thepatient’sclinicalsituation,whetherprovidingcareinacommunityora

hospitalsetting.Youmustcarryoutathoroughassessmentofthepatient’s

conditionandconsiderthelikelyprognosis.Itcanbedifficulttoestimate

whenapatientisapproachingtheendoflife,andyoushouldallowfora

rangeofpossibilitieswhenplanningcare.i

17 SeeGood Medical Practice (2006),paragraphs41-42athttp://www.gmc-uk.org/guidance/good_medical_ practice/working_with_colleagues.asp

18 GMCguidanceonRaising Concerns about Patient Safety(2006)providesmoredetailedadvice http://www.gmc-uk.org/guidance/ethical_guidance/raising_concerns.asp.www.goldstandardsframework. nhs.uk



25 Youshouldidentifytreatmentoptionsbasedon:

(a)up-to-dateclinicalevidenceabouteffectiveness,sideeffectsandother

risks

(b)relevantclinicalguidelinesonthetreatmentandmanagementofthe

patient’scondition,orofpatientswithsimilarunderlyingriskfactors,

suchasthoseissuedbytheNationalInstituteforHealthandClinical

Excellence(NICE)andtheScottishIntercollegiateGuidelinesNetwork

(SIGN).

26 Youmustalsogiveearlyconsiderationtothepatient’spalliativecare

needs,andtakestepstomanageanypain,breathlessness,agitationor

otherdistressingphysicalorpsychologicalsymptomsiithattheymaybe

experiencing,aswellaskeepingtheirnutritionandhydrationstatusunder

review.

27 Youmustseekadvice19orasecondopinion20fromacolleaguewithrelevant

experience(whomaybefromanotherspecialty,suchaspalliativecare,or

anotherdiscipline,suchasnursing)if:

(a)youandthehealthcareteamhavelimitedexperienceofthecondition

(b) youareuncertainabouthowtomanageapatient’ssymptoms

effectively

(c)youareindoubtabouttherangeofoptions,orthebenefits,burdens

andrisksofaparticularoptionfortheindividualpatient

19 Adviceshouldusuallybefromanexperiencedcolleagueoutsidetheteam.Advicemaybeobtainedbytelephone, ifnecessary,providedyouhavegiventhatcolleagueup-to-dateinformationaboutthepatient’scondition.

20 Asecondopinionshouldbefromaseniorclinicianwithexperienceofthepatient’sconditionbutwhoisnot directlyinvolvedinthepatient’scare.Itshouldbebasedonanexaminationofthepatientbytheclinician.



(d)thereisaseriousdifferenceofopinionbetweenyouandthepatient,

withinthehealthcareteam,orbetweentheteamandthosecloseto

apatientwholackscapacity,aboutthepreferredoptionforapatient’s

treatmentandcare

(e)itisdecidedthatclinicallyassistednutritionorhydrationshouldbe

withdrawnornotstartedinthecircumstancessetoutinparagraphs

119-120.

Explaining the clinical issues

28 Youshouldexploretreatmentoptionswithpatients(andwiththoseclose

tothemifappropriate)focusingonthegoalsofcare,andexplainingthe

likelybenefits,burdensandrisks.Youshouldbearinmindthatpatientsand

thoseclosetothemmaynotalwayshaveaclearorrealisticunderstanding

ofthediagnosisorthebenefits,burdensandrisksofatreatmentoption.

Thisisparticularlythecasefortreatmentssuchascardio-pulmonary

resuscitation(CPR)andclinicallyassistednutritionandhydration,asthe

public’sknowledgeabouttheclinicalcomplexitiesmaybelimited.

29 Patientsandthoseclosetothemmayalsodrawincorrectconclusions

fromtheterminologyusedbyhealthcarestaffabouttherisksorexpected

outcomesofthesetreatments.Youshouldexplainthetreatmentoptionsin

awaythattheycanunderstand,explaininganymedicalorothertechnical

terminologythatyouuse.

30 Youshouldbeopenaboutanyunderlyinguncertainties,asthishelpsto

buildtrustandreducethescopeforlaterconflict.Youcanfinddetailed

adviceonhowtocommunicateclearlyandeffectivelywithpatientsand



thoseclosetothem,especiallywhenexplainingthesideeffectsorother

risksassociatedwithtreatments,inConsent: patients and doctors making

decisions together(paragraphs7-12,18-25and28-36).

Addressing uncertainty

31 Ifthereisareasonabledegreeofuncertaintyaboutwhetheraparticular

treatmentwillprovideoverallbenefitforapatientwholackscapacityto

makethedecision,thetreatmentshouldbestartedinordertoallowa

clearerassessmenttobemade.

32 Youmustexplainclearlytothoseclosetothepatientandthehealthcare

teamthatthetreatmentwillbemonitoredandreviewed,andmaybe

withdrawnatalaterstageifitprovesineffectiveortooburdensomeforthe

patientinrelationtothebenefits.Youshouldexplainthebasisonwhich

thedecisionwillbemadeaboutwhetherthetreatmentwillcontinueorbe

withdrawn.

Emotional difficulties in end of life decision making

33 Somemembersofthehealthcareteam,orpeoplewhoareclosetothe

patient,mayfinditmoredifficulttocontemplatewithdrawingalife-

prolongingtreatmentthantodecidenottostartthetreatmentinthefirst

place.Thismaybebecauseoftheemotionaldistressthatcanaccompanya

decisiontowithdrawlife-prolongingtreatment,orbecausetheywouldfeel

responsibleforthepatient’sdeath.However,youshouldnotallowthese

anxietiestooverrideyourclinicaljudgementandleadyoueithernotto

starttreatmentthatmaybeofsomebenefittothepatient,ortocontinue

treatmentthatisofnooverallbenefit.



34 Youshouldexplaintothoseclosetothepatientthat,whateverdecisions

aremadeaboutprovidingparticulartreatments,thepatient’sconditionwill

bemonitoredandmanagedtoensurethattheyarecomfortableand,asfar

aspossible,freeofpainandotherdistressingsymptoms.Youshouldalso

makeclearthatadecisiontowithdraw,ornottostartatreatmentwillbe

reviewedinthelightofchangesintheclinicalsituation.

35 Youshouldofferadviceaboutanysupportthatmaybeavailableforthe

patient,forthoseclosetothemandformembersofthehealthcareteam,if

theyarefindingthesituationemotionallychallenging.Sourcesofsupport

includepatientandcarersupportandadvocacyservices,counsellingand

chaplaincyservices,andethicssupportnetworks.iii

36 Youshoulddoyourbesttomakesurethatpatientswhomayfeel

pressuredbyfamilyorcarerstoacceptorrefuseparticularinvestigations

ortreatmentsaregiventhetime,informationandhelptheyneedtoreach

theirowndecisions.

Resource constraints

37 Decisionsaboutwhattreatmentoptionscanbeofferedmaybe

complicatedbyresourceconstraints–suchasfundingrestrictionson

certaintreatmentsintheNHS,orlackofavailabilityofintensivecarebeds.

Insuchcircumstances,youmustprovideasgoodastandardofcareasyou

canforthepatient,whilebalancingsometimescompetingdutiestowards

thewiderpopulation,fundingbodiesandemployers.21Therewilloftenbe

nosimplesolution.Ideally,decisionsaboutaccesstotreatmentsshouldbe

21 SeeGood Medical Practice(2006),paragraph9.



madeonthebasisofanagreedlocalornationalpolicyivthattakesaccount

ofthehumanrightsimplications.Decisionsmadeonacaseby-casebasis,

withoutreferencetoagreedpolicy,riskintroducingelementsofunfair

discriminationorfailuretoconsiderproperlythepatient’slegalrights(see

paragraphs7-9).

38 Ifresourceconstraintsareafactor,youmust:

(a)providethebestservicepossiblewithintheresourcesavailable

(b)befamiliarwithanylocalandnationalpoliciesthatsetoutagreed

criteriaforaccesstotheparticulartreatment(suchasnationalservice

frameworksandNICEandSIGNguidelines)

(c)makesurethatdecisionsaboutprioritisingpatientsarefairandbased

onclinicalneedandthepatient’scapacitytobenefit,andnotsimply

ongroundsofage,race,socialstatusorotherfactorsthatmay

introducediscriminatoryaccesstocare

(d)beopenandhonestwiththepatient(iftheyhavecapacity),orthose

closetothem,andtherestofthehealthcareteamaboutthedecision-

makingprocessandthecriteriaforprioritisingpatientsinindividual

cases.

39 Youshouldnotwithdrawordecidenottostarttreatmentifdoingsowould

involvesignificantriskforthepatientandtheonlyjustificationisresource

constraints.Ifyouhavegoodreasontothinkthatpatientsafetyisbeing

compromisedbyinadequateresources,anditisnotwithinyourpowerto

putthematterright,youshoulddrawthesituationtotheattentionofthe

appropriateindividualororganisation,followingourguidanceonRaising

concerns about patient safety(2006).



Assessing the overall benefit of treatment options

Weighing the benefits, burdens and risks40 Thebenefitsofatreatmentthatmayprolonglife,improveapatient’s

conditionormanagetheirsymptomsmustbeweighedagainsttheburdens

andrisksforthatpatient,beforeyoucanreachaviewaboutitsoverall

benefit.Forexample,itmaybeofnooverallbenefittoprovidepotentially

life-prolongingbutburdensometreatmentinthelastdaysofapatient’slife

whenthefocusofcareischangingfromactivetreatmenttomanagingthe

patient’ssymptomsandkeepingthemcomfortable.

41 Thebenefits,burdensandrisksassociatedwithatreatmentarenotalways

limitedtoclinicalconsiderations,andyoushouldbecarefultotakeaccount

oftheotherfactorsrelevanttothecircumstancesofeachpatient.

42 Patientswhohavecapacitywillreachtheirownviewaboutwhatpersonal

factorstheywishtoconsiderandtheweighttheywishtoattachtothese

alongsidetheclinicalconsiderations.(Seethemodelfordecisionmakingin

paragraph14.)

43 Inthecaseofpatientswholackcapacity,theirlegalproxywillmakethese

judgementswithadvicefromyouandothersinvolvedinthepatient’scare.

Ifyouareresponsibleformakingthedecisionaboutoverallbenefit,those

closetothepatientandmembersofthehealthcareteamarelikelytohave

knowledgeaboutthepatient’swishes,valuesandpreferencesandanyother

personalfactorsthatshouldbetakenintoaccount.(Seethemodelfor

decisionmakinginparagraph16.)Youmayalsofindinformationaboutthe

patient’swishesintheirnotes,advancecareplanorotherrecord,suchasan

advancerequestfororrefusaloftreatment.



Avoiding bias 44 Somepatients,andthoseclosetothem,maynotbeawareoftherangeof

servicesandtreatmentsavailabletothem,whichcouldhaveabearingon

theoptionstheywouldseeasofferingoverallbenefit.Youshouldsatisfy

yourselfthatthepatienthassufficientinformationandsupportsothat

theyarenotdisadvantagedinaccessingbeneficialtreatmentandcare.

45 Itmaybeparticularlydifficulttoarriveataviewabouttheoverallbenefit

ofatreatmentifthepatienthasproblemsincommunicatingtheirwishes

andpreferences,orlackscapacity.Insuchcasesyoumustnotsimply

relyonyourownvaluesoronthoseofthepeopleconsultedaboutthe

patient.Youshouldtakeallreasonablestepstomaximisethepatient’s

abilitytoparticipateinthedecision-makingprocess.Youcanfinddetailed

adviceabouthowtoapproachthisinConsent: patients and doctors making

decisions together.

46 Youmustbecarefulnottorelyonyourpersonalviewsaboutapatient’s

qualityoflifeandtoavoidmakingjudgementsbasedonpoorlyinformed

orunfoundedassumptionsaboutthehealthcareneedsofparticulargroups,

suchasolderpeopleandthosewithdisabilities.v



Resolving disagreements

47 Youshouldaimtoreachaconsensusaboutwhattreatmentandcare

wouldbeofoverallbenefittoapatientwholackscapacity.Disagreements

mayarisebetweenyouandthoseclosetothepatient,orbetweenyou

andmembersofthehealthcareteam,orbetweenthehealthcareteam

andthoseclosetothepatient.Dependingontheseriousnessofany

disagreement,itisusuallypossibletoresolveit;forexample,byinvolving

anindependentadvocate,seekingadvicefromamoreexperienced

colleague,obtainingasecondopinion,holdingacaseconference,orusing

localmediationservices.Inworkingtowardsaconsensus,youshouldtake

intoaccountthedifferentdecision-makingrolesandauthorityofthoseyou

consult,andthelegalframeworkforresolvingdisagreements.

48 If,havingtakenthesesteps,thereisstillsignificantdisagreement,you

shouldseeklegaladviceonapplyingtotheappropriatestatutorybody

forreview(Scotland)orappropriatecourtforanindependentruling.22The

patient,thoseauthorisedtoactforthemandthoseclosetothemshouldbe

informed,asearlyaspossible,ofanydecisiontostartsuchproceedings,so

thattheyhavetheopportunitytoparticipateorberepresented.

22 Thecourtswillconsiderwhethertreatmentisinthepatient’s‘bestinterests’(England,WalesandNorthern Ireland).ThecourtsinScotland,andtheMentalWelfareCommissionforScotland’sNominatedPractitioner,will considerwhethertreatmentisof‘benefit’tothepatient.Seethelegalannex.



49 Insituationsinwhichapatientwithcapacitytodeciderequestsatreatment

anddoesnotacceptyourviewthatthetreatmentwouldnotbeclinically

appropriate,thestepssuggestedaboveforresolvingdisagreementmayalso

behelpful.

Advance care planning

The benefits50 Astreatmentandcaretowardstheendoflifearedeliveredbymulti-

disciplinaryteamsoftenworkingacrosslocalhealth,socialcareand

voluntarysectorservices,youmustplanaheadasmuchaspossibleto

ensuretimelyaccesstosafe,effectivecareandcontinuityinitsdeliveryto

meetthepatient’sneeds.vi

51 Theemotionaldistressandotherpressuresinherentinsituationsin

whichpatientsareapproachingtheendoftheirlifesometimesleadto

misunderstandingsandconflictbetweendoctorsandpatientsandthose

closetothem,orbetweenmembersofthehealthcareteam.However,this

canusuallybeavoidedthroughearly,sensitivediscussionandplanning

abouthowbesttomanagethepatient’scare.

What to discuss52 Patientswhosedeathfromtheircurrentconditionisaforeseeable

possibilityarelikelytowanttheopportunity(whethertheyareina

communityorhospitalsetting)todecidewhatarrangementsshouldbe

madetomanagethefinalstagesoftheirillness.Thiscouldincludehaving

accesstopalliativecare,andattendingtoanypersonalandothermatters

thattheyconsiderimportanttowardstheendoftheirlife.vii



53 Ifapatientinyourcarehasaconditionthatwillimpairtheircapacityasit

progresses,orisotherwisefacingasituationinwhichlossorimpairment

ofcapacityisaforeseeablepossibility,youshouldencouragethemtothink

aboutwhattheymightwantforthemselvesshouldthishappen,andto

discusstheirwishesandconcernswithyouandthehealthcareteam.Your

discussionsshouldcover:

(a) thepatient’swishes,preferencesorfearsinrelationtotheirfuture

treatmentandcare

(b) thefeelings,beliefsorvaluesthatmaybeinfluencingthepatient’s

preferencesanddecisions

(c)thefamilymembers,othersclosetothepatientoranylegalproxiesthat

thepatientwouldliketobeinvolvedindecisionsabouttheircare

(d)interventionswhichmaybeconsideredorundertakeninanemergency,

suchascardiopulmonaryresuscitation(CPR),whenitmaybehelpful

tomakedecisionsinadvance

(e)thepatient’spreferredplaceofcare(andhowthismayaffectthe

treatmentoptionsavailable)

(f) thepatient’sneedsforreligious,spiritualorotherpersonalsupport.

54 Dependingonthepatient’scircumstances,itmayalsobeappropriateto

createopportunitiesforthemtotalkaboutwhattheywanttohappenafter

theydie.Somepatientswillwanttodiscusstheirwishesinrelationtothe

handlingoftheirbody,andtheirbeliefsorvaluesaboutorganortissue

donation.



55 Youmustapproachallsuchdiscussionssensitively.Ifyouareunsurehow

besttodothisorhowtorespondtoanynon-clinicalissuesraisedbythe

patient,youshouldrefertorelevantguidelinesongoodpracticeinadvance

careplanning.viiiIfthepatientagrees,youshouldinvolveinthediscussions

othermembersofthehealthcareteam,peoplewhoareclosetothepatient,

oranindependentadvocate.

When patients do not want to know56 Somepatientsmaynotbereadytothinkabouttheirfuturecare,ormay

findtheprospectofdoingsotoodistressing.However,no-oneelsecan

makeadecisiononbehalfofanadultwhohascapacity.Ifapatientasks

youtomakedecisionsontheirbehalforwantstoleavedecisionstoa

relative,partnerorfriend,youshouldexplainthatitisimportantthatthey

understandtheoptionsopentothem,andwhatthetreatmentwillinvolve.

Iftheydonotwantthisinformation,youshouldtrytofindoutwhy.

57 Ifthepatientstilldoesnotwanttoknowindetailabouttheirconditionor

thetreatment,youshouldrespecttheirwishesasfaraspossible.Butyou

mustexplaintheimportanceofprovidingatleastthebasicinformation

theyneedinordertogivevalidconsenttoaproposedinvestigationor

treatment.Thisislikelytoincludewhattheinvestigationortreatment

aimstoachieveandwhatitwillinvolve.Forexample,whetheraprocedure

isinvasive;whatlevelofpainordiscomforttheymightexperienceand

whatcanbedonetominimiseit;whattheyshoulddotoprepareforthe

investigationortreatment;andwhetheritinvolvesanyseriousrisks.



58 Ifthepatientinsiststhattheydonotwanteventhisbasicinformation,you

mustexplainthepotentialconsequencesofcarryingoutaninvestigationor

treatmentiftheirconsentmaybeopentosubsequentlegalchallenge.You

mustrecordthefactthatthepatienthasdeclinedrelevantinformationand

whotheyaskedtomakethedecisionabouttreatment.Youmustalsomake

itclearthattheycanchangetheirmindandhavemoreinformationatany

time.

When others want information to be withheld from the patient59 Apartfromcircumstancesinwhichapatientrefusesinformation,you

shouldnotwithholdinformationnecessaryformakingdecisions(including

whenaskedbysomeoneclosetothepatient),unlessyoubelievethatgiving

itwouldcausethepatientseriousharm.Inthiscontext‘seriousharm’

meansmorethanthatthepatientmightbecomeupsetordecidetorefuse

treatment.Ifyouwithholdinformationfromthepatient,youmustrecord

yourreasonsfordoingsointhemedicalrecords,andbepreparedtoexplain

andjustifyyourdecision.Youshouldregularlyreviewyourdecisionand

considerwhetheryoucouldgiveinformationtothepatientlater,without

causingthemseriousharm.

Formalising a patient’s wishes60 Ifapatientwantstonominatesomeonetomakedecisionsontheir

behalfiftheylosecapacity,oriftheywanttomakeanadvancerefusal

ofaparticulartreatment,youshouldexplainthattheremaybewaysto

formalisethesewishes,suchasappointinganattorneyormakingawritten

advancedecisionordirective.23Youshouldsupportapatientwhohas

23 TheMental Capacity Act 2005(MCA)andtheAdults Within Incapacity (Scotland) Act 2000legislationmake provisionforadultstograntpowersofattorneytomakehealthcaredecisions.NorthernIrelandproposessimilar legislation.TheMCAsetsoutstatutoryrequirementsformakingadvancerefusalsoflife-prolongingtreatments. Seethelegalannex.



decidedtotakethesesteps.Youshouldprovideadviceontheclinicalissues

andrecommendthattheygetindependentadviceonhowtoformalisetheir

wishes.ix

Recording and sharing the advance care plan61 Youmustmakearecordofthediscussionandofthedecisionsmade.You

shouldmakesurethatarecordoftheadvancecareplanismadeavailable

tothepatient,andissharedwithothersinvolvedintheircare(provided

thatthepatientagrees),sothateveryoneisclearaboutwhathasbeen

agreed.(Seealsoparagraphs22-23aboutworkinginteamsandacross

serviceboundaries.)Ifapatientmakesanadvancerefusaloftreatment,you

shouldencouragethemtosharethisinformationwiththoseclosetothem,

withotherdoctors,andwithkeyhealthandsocialcarestaffinvolvedin

theircare.

62 Youmustbearinmindthatadvancecareplansneedtobereviewedand

updatedasthepatient’ssituationorviewschange.

Acting on advance requests for treatment

63 Whenplanningahead,somepatientsworrythattheywillbeunreasonably

deniedcertaintreatmentstowardstheendoftheirlife,andsotheymay

wishtomakeanadvancerequestforthosetreatments.Somepatients

approachingtheendoflifewanttoretainasmuchcontrolaspossibleover

thetreatmentstheyreceiveandmaywantatreatmentthathassome

prospectsofprolongingtheirlife,evenifithassignificantburdensandrisks.



64 Whenrespondingtoarequestforfuturetreatment,youshouldexplorethe

reasonsfortherequestandthedegreeofimportancethepatientattaches

tothetreatment.Youshouldexplainhowdecisionsabouttheoverall

benefitofthetreatmentwouldbeinfluencedbythepatient’scurrent

wishesiftheylosecapacity(seethemodelinparagraph16).Youshould

makeclearthat,althoughfuturedecisionscannotbeboundbytheirrequest

foraparticulartreatment,theirrequestwillbegivenweightbythose

makingthedecision.

65 Ifapatienthaslostcapacitytodecide,youmustprovideanytreatment

youassesstobeofoverallbenefittothepatient.Whenassessingoverall

benefit,youshouldtakeintoaccountthepatient’spreviousrequest,what

youknowabouttheirotherwishesandpreferences,andthegoalsofcare

atthatstage(forexample,whetherthefocushaschangedtopalliative

care),andyoushouldconsultthepatient’slegalproxyorthosecloseto

thepatient,assetoutinthedecision-makingmodelinparagraph16.The

patient’spreviousrequestmustbegivenweightand,whenthebenefits,

burdensandrisksarefinelybalanced,willusuallybethedecidingfactor.

66 Ifsignificantdisagreementarisesbetweenyouandthepatient’slegal

proxy,thoseclosetothepatient,ormembersofthehealthcareteam,

aboutwhatwouldbeofoverallbenefit,youmusttakestepstoresolvethe

disagreement(seeparagraphs47-48).

Acting on advance refusals of treatment

67 Somepatientsworrythattowardstheendoftheirlifetheymaybegiven

medicaltreatmentsthattheydonotwant.Sotheymaywanttomaketheir



wishesclearaboutparticulartreatmentsincircumstancesthatmightarise

inthecourseoftheirfuturecare.Whendiscussinganyproposedadvance

refusal,youshouldexplaintothepatienthowsuchrefusalswouldbetaken

intoaccountiftheygoontolosecapacitytomakedecisionsabouttheircare.

When advance refusals are binding68 Ifapatientlackscapacityandinformationaboutawrittenorverbal

advancerefusaloftreatmentisrecordedintheirnotesorisotherwise

broughttoyourattention,youmustbearinmindthatvalidandapplicable

advancerefusalsmustberespected.Avalidadvancerefusalthatisclearly

applicabletothepatient’spresentcircumstanceswillbelegallybinding

inEnglandandWales24(unlessitrelatestolife-prolongingtreatment,in

whichcasefurtherlegalcriteriamustbemet).Validandapplicableadvance

refusalsarepotentiallybindinginScotland25andNorthernIreland26,

althoughthishasnotyetbeentestedinthecourts.

Non-binding advance refusals69 Writtenandverbaladvancerefusalsoftreatmentthatarenotlegally

binding,shouldbetakenintoaccountasevidenceoftheperson’swishes

whenyouareassessingwhetheraparticulartreatmentwouldbeofoverall

benefittothem.

24 ThecodeofpracticesupportingtheMental Capacity Act 2005,whichusesthelegalterm‘advancedecision’,sets outdetailedcriteriathatdeterminewhenadvancedecisionsaboutlife-prolongingtreatmentsarelegallybinding –seethelegalannex.

25 ThecodeofpracticesupportingtheAdults with Incapacity (Scotland) Act 2000,whichusesthelegalterm ‘advancedirective’,givesadviceontheirlegalstatusandhowadvancedirectivesshouldbetakenintoaccountin decisionsabouttreatment.

26 InNorthernIrelandthereisnostatutoryprovisionorcaselawcoveringadvancerefusals,butitislikelythatthe principlesestablishedinEnglishcaselawprecedentswouldbefollowed.



Assessing the validity of advance refusals70 Ifyouaretheclinicianwithleadresponsibilityforthepatient’scare,you

shouldassessboththevalidityandtheapplicabilityofanyadvancerefusal

oftreatmentthatisrecordedinthenotesorthathasotherwisebeen

broughttoyourattention.Thefactorsyoushouldconsideraredifferentin

thefourUKcountries,reflectingdifferencesinthelegalframework(seethe

legalannex).However,inrelationtovalidity,themainconsiderationsare

that:

(a) thepatientwasanadultwhenthedecisionwasmade(16yearsoldor

overinScotland,18yearsoldoroverinEngland,WalesandNorthern

Ireland)

(b) thepatienthadcapacitytomakethedecisionatthetimeitwasmade

(UKwide)

(c)thepatientwasnotsubjecttoundueinfluenceinmakingthedecision

(UKwide)

(d) thepatientmadethedecisiononthebasisofadequateinformation

abouttheimplicationsoftheirchoice(UKwide)

(e)ifthedecisionrelatestotreatmentthatmayprolonglifeitmustbein

writing,signedandwitnessed,andincludeastatementthatitisto

applyevenifthepatient’slifeisatstake(EnglandandWalesonly27)

(f) thedecisionhasnotbeenwithdrawnbythepatient(UKwide)

(g)thepatienthasnotappointedanattorney,sincethedecisionwasmade,

tomakesuchdecisionsontheirbehalf(England,WalesandScotland)

(h)morerecentactionsordecisionsofthepatientareclearlyinconsistent

withthetermsoftheirearlierdecision,orinsomewayindicatethey

mayhavechangedtheirmind.

27 TheserequirementsaresetoutintheMCAanditsCodeofPractice,Chapter9.



Assessing the applicability of advance refusals71 Inrelationtojudgementsaboutapplicability,thefollowingconsiderations

applyacrosstheUK:

(a)whetherthedecisionisclearlyapplicabletothepatient’scurrent

circumstances,clinicalsituationandtheparticulartreatmentor

treatmentsaboutwhichadecisionisneeded

(b)whetherthedecisionspecifiesparticularcircumstancesinwhichthe

refusaloftreatmentshouldnotapply

(c)howlongagothedecisionwasmadeandwhetherithasbeenreviewed

orupdated(thismayalsobeafactorinassessingvalidity)

(d)whethertherearereasonablegroundsforbelievingthatcircumstances

existwhichthepatientdidnotanticipateandwhichwouldhave

affectedtheirdecisionifanticipated,forexampleanyrelevantclinical

developmentsorchangesinthepatient’spersonalcircumstancessince

thedecisionwasmade.

Doubt or disagreement about the status of advance refusals72 Advancerefusalsoftreatmentoftendonotcometolightuntilapatienthas

lostcapacity.Insuchcases,youshouldstartfromapresumptionthatthe

patienthadcapacitywhenthedecisionwasmade,unlesstherearegrounds

tobelieveotherwise.

73 Ifthereisdoubtordisagreementaboutthevalidityorapplicabilityofan

advancerefusaloftreatment,youshouldmakefurtherenquiries(iftime

permits)andseekarulingfromthecourtifnecessary.Inanemergency,

ifthereisnotimetoinvestigatefurther,thepresumptionshouldbein

favourofprovidingtreatment,ifithasarealisticchanceofprolonginglife,

improvingthepatient’scondition,ormanagingtheirsymptoms.



74 Ifitisagreed,byyouandthosecaringforthepatient,thatanadvance

refusaloftreatmentisinvalidornotapplicable,thereasonsforreachingthis

viewshouldbedocumented.

Recording and communicating decisions

75 Youmustmakearecordofthedecisionsmadeaboutapatient’streatment

andcare,andwhowasconsultedinrelationtothosedecisions.

76 Youmustdoyourbesttomakesurethatallthoseconsulted,especially

thoseresponsiblefordeliveringcare,areinformedofthedecisionsandare

clearaboutthegoalsandtheagreedcareplan,unlessthepatientindicates

thatparticularindividualsshouldnotbeinformed.

77 Youshouldcheckthehandoverarrangementswhereyouwork,andusethe

availablesystemsandarrangementsforinformationstorageandexchange,

toensurethattheagreedcareplanissharedwithinthehealthcareteam,

withbothpaidandunpaidcarersoutsidetheteamandwithotherhealth

professionalsinvolvedinprovidingthepatient’scare.x,xiThisisparticularly

importantwhenpatientsmoveacrossdifferentcaresettings(hospital,

ambulance,carehome)andduringanyout-of-hoursperiod.Failureto

communicatesomeorallrelevantinformationcanleadtoinappropriate

treatmentbeinggiven(forexample,DNACPRdecisionsnotbeingknown

about)andfailuretomeetthepatient’sneeds(forexample,theirwishto

remainathomenotbeingtakenintoaccount).



Reviewing decisions

78 Apatient’sconditionmayimproveunexpectedly,ormaynotprogress

asanticipated,ortheirviewsaboutthebenefits,burdensandrisksof

treatmentmaychangeovertime.Youshouldmakesurethatthereareclear

arrangementsinplacetoreviewdecisions.xiiNewdecisionsaboutstartingor

continuingwithatreatmentmaybeneededinthelightofchangesinthe

patient’sconditionandcircumstances,anditmaybenecessarytoseeka

secondopinionor,ifthisisnotpossible,advicefromanexperiencedcolleague.

Conscientious objections

79 Youcanwithdrawfromprovidingcareifyourreligious,moralorother

personalbeliefsaboutprovidinglife-prolongingtreatmentleadyouto

objecttocomplyingwith:

(a)apatient’sdecisiontorefusesuchtreatment,or

(b)adecisionthatprovidingsuchtreatmentisnotofoverallbenefittoa

patientwholackscapacitytodecide.

However,youmustnotdosowithoutfirstensuringthatarrangements

havebeenmadeforanotherdoctortotakeoveryourrole.Itisnot

acceptabletowithdrawfromapatient’scareifthiswouldleavethepatient

orcolleagueswithnowheretoturn.RefertoourguidanceonPersonal

Beliefs and Medical Practice(2008)formoreinformation.



80 Ifyoudisagreewithadecisiontowithdrawornottostartalife-prolonging

treatmentonthebasisofyourclinicaljudgementaboutwhetherthe

treatmentshouldbeprovided,youshouldfollowtheguidancein

paragraphs47-48aboutresolvingdisagreements.

Organ donation

81 Ifapatientisclosetodeathandtheirviewscannotbedetermined,you

shouldbepreparedtoexplorewiththoseclosetothemwhethertheyhad

expressedanyviewsaboutorganortissuedonation,ifdonationislikelyto

beapossibility.xiii

82 Youshouldfollowanynationalproceduresforidentifyingpotential

organdonorsand,inappropriatecases,fornotifyingthelocaltransplant

coordinator.xivYoumusttakeaccountoftherequirementsinrelevant

legislationxvandinanysupportingcodesofpracticexvi,inanydiscussions

thatyouhavewiththepatientorthoseclosetothem.Youshouldmake

clearthatanydecisionaboutwhetherthepatientwouldbeasuitable

candidatefordonationwouldbemadebythetransplantcoordinatoror

team,andnotbyyouandtheteamprovidingtreatment.

Care after death

83 Yourprofessionalresponsibilitydoesnotcometoanendwhenapatient

dies.Forthepatient’sfamilyandothersclosetothem,theirmemoriesof

thedeath,andofthepersonwhohasdied,maybeaffectedbythewayin

whichyoubehaveatthisverydifficulttime.



The wishes and needs of the bereaved84 Deathandbereavementaffectdifferentpeopleindifferentways,andan

individual’sresponsewillbeinfluencedbyfactorssuchastheirbeliefs,culture,

religionandvalues.xviiYoumustshowrespectforandrespondsensitively

tothewishesandneedsofthebereaved,takingintoaccountwhatyou

knowofthepatient’swishesaboutwhatshouldhappenaftertheirdeath,

includingtheirviewsaboutsharinginformation.28Youshouldbeprepared

tooffersupportandassistancetothebereaved,forexample,byexplaining

wheretheycangetinformationabout,andhelpwith,theadministrative

practicalitiesfollowingadeath;orbyinvolvingothermembersoftheteam,

suchasnursing,chaplaincyorbereavementcarestaff.xviii

Certification, post-mortems, and referral to a coroner or procurator fiscal85 Youmustbeprofessionalandcompassionatewhenconfirmingand

pronouncingdeathandmustfollowthelaw,andstatutorycodesof

practice,governingcompletionofdeathandcremationcertificates.xixIfit

isyourresponsibilitytosignadeathorcremationcertificate,youshould

dosowithoutunnecessarydelay.Ifthereisanyinformationonthedeath

certificatethatthoseclosetothepatientmaynotknowabout,maynot

understandormayfinddistressing,youshouldexplainittothemsensitively

andanswertheirquestionsxx,takingaccountofthepatient’swishesifthey

areknown.

28 Disclosureofinformationafterapatient’sdeathiscoveredatparagraphs70-72oftheGMCguidance onConfidentiality.



86 Youmustcomplywiththelegalrequirementswhereyouworkforreporting

deathstoacoroner(England,WalesandNorthernIreland)orprocurator

fiscal(Scotland).Youshouldbepreparedtoanswerquestionsfromthose

closetothepatientaboutreportingproceduresandpost-mortems,orto

suggestothersourcesofinformationandadvice.xxi

87 Youmusttreatthepatient’sbodywithdignityandrespect.Youshould

makesure,whereverpossible,thatthebodyishandledinlinewiththeir

personalreligiousorotherbeliefs.

Training and audit

88 Youshouldbefamiliarwithrelevantguidelinesanddevelopmentsthat

affectyourworkinprovidingcaretowardstheendoflife,andregularlytake

partineducationalactivitiesthatmaintainanddevelopyourcompetence

andperformanceinthisarea.Youmustkeepuptodatewiththelawand

anysupportingcodesofpracticethatarerelevanttothisareaandapply

whereyouwork.

89 Theremaybeeventsarisingfromthecareofaparticularpatientby

yourteam,unitorpracticethatsuggestwaysofimprovingtreatments

orstandardsofcareforpatientsapproachingtheendoflife.Youshould

participateconstructivelyinanylocalarrangements,suchasclinicalaudit

andcasereviews,thataimtoimproveoutcomesandidentifyandspread

goodpractice.



Neonates, children and young people

90 Children,includingneonates,andyoungpeopleareindividualswithrights

thatmustberespected.Thismeansthat,iftheyareabletoexpressaview

andtakepartindecisionmaking,youmustlistentothemandtakeaccount

ofwhattheyhavetosayaboutthingsthataffectthem,respectingtheir

decisionsandconfidentiality.Youhaveadutytosafeguardandprotectthe

healthandwell-beingofchildrenandyoungpeople.Youmustalsoconsider

theroleandresponsibilitiesofparentsandothersclosetothem,butyour

primarydutyistothechildoryoungpersonwhoisyourpatient.

91 Ourguidance,0-18 years: guidance for all doctors,providesdetailedadvice

onapplyingtheseprincipleswhencaringforchildrenandyoungpeople.The

advicebelowfocusesonhelpingyoutoapplytheprinciplesinsituationsin

whichchildrenoryoungpeoplemaybeapproachingtheendoftheirlife.

Considering the benefits, burdens and risks of treatment

92 Decisionsabouttreatmentforchildrenandyoungpeoplemustalwaysbe

intheirbestinterests.29Thismeansweighingthebenefits,burdensandrisks

oftreatmentfortheindividualchild.Achild’sbestinterestsarenotalways

limitedtoclinicalconsiderationsand,asthetreatingdoctor,youshouldbe

carefultotakeaccountofanyotherfactorsrelevanttothecircumstancesof

eachchild.

93 Identifyingthebestinterestsofchildrenoryoungpeoplewhomaybe

approachingtheendoflifecanbechallenging.Thisisparticularlythecase

whenthereareuncertaintiesaboutthelong-termoutcomesoftreatment,

29 ‘Bestinterests’isusedhereasthetermiswidelyacceptedandusedacrosstheUKinrelationtodecisions involvingchildrenandyoungpeople.Itinvolvesweighingthebenefits,burdensandrisksoftreatment,asdo decisionsabout‘overallbenefit’inthecaseofadultswholackcapacitytodecide.



whenemergenciesarise,andinthecaseofextremelyprematureneonates

whoseprospectsforsurvivalareknowntobeverypoor.xxiiComplexand

emotionallydemandingdecisionsmayhavetobemade;forexample,about

whethertoresuscitateandadmitaneonatetointensivecare,andwhether

tocontinueinvasiveintensivecareorreplaceitwithpalliativecare.Itcan

beverydifficulttojudgewhentheburdensandrisks,includingthedegree

ofsufferingcausedbytreatment,outweighthebenefitsofthetreatmentto

thepatient.

94 Youmusttakeaccountofup-to-date,authoritativeclinicalguidancexxiii

whenconsideringwhattreatmentmightbeinachildoryoungperson’sbest

interests.Ifthereareuncertaintiesabouttherangeofoptionsformanaging

theircondition,orthelikelyoutcomes,youshouldseekadviceorasecond

opinionasearlyaspossiblefromacolleaguewithrelevantexpertise(who

maybefromanotherspecialty,suchaspalliativecare,oranotherdiscipline,

suchasnursing).

95. Parents30playanimportantroleinassessingtheirchild’sbestinterests,

andyoushouldworkinpartnershipwiththemwhenconsideringdecisions

abouttheirchild’streatment.Youshouldsupportparents,andmustshare

withthemtheinformationtheywantorneed,inawaythattheycan

understand,abouttheirchild’sconditionandoptionsforcare(subjectto

considerationsofconfidentiality).Youmusttakeaccountoftheirviews

whenidentifyingoptionsthatareclinicallyappropriateandlikelytobein

thechild’sbestinterests.xxiv

30 ‘Parent’meansanyoneholding‘parentalauthority’.Fordetailsofwhocanholdparentalauthorityreferto0-18 years: guidance for all doctors http://www.gmc-uk.org/guidance/ethical_guidance/children_guidance_index. asp



96 Youmustbeabletoexplainandjustifythefactorsthatyoujudgeshould

betakenintoaccountwhenconsideringdecisionsaboutwhattreatment

mightbeinthebestinterestsofachildoryoungperson.Youmustnotrely

onyourpersonalvalueswhenmakingbestinterestsdecisions.Youmustbe

carefulnottomakejudgementsbasedonpoorlyinformedorunfounded

assumptionsabouttheimpactofadisabilityonachildoryoungperson’s

qualityoflife.

Making the decision

97 Youcanprovidemedicaltreatmenttoachildoryoungpersonwiththeir

consentiftheyhavecapacitytomakethedecision,orwiththeconsentof

aparentorthecourt.Detailedguidanceonthedifferentdecision-making

authorityofpeoplewithparentalresponsibility,familymembersand

informalcarersisprovidedintheGMC’s0-18 years: guidance for all doctors.

98 Youcanprovideemergencytreatmentwithoutconsenttosavethelifeof,

orpreventseriousdeteriorationinthehealthof,achildoryoungperson.

Children and young people who have capacity

99 Youmustdecidewhetherthechildoryoungpersonisabletounderstand

thenature,purposeandpossibleconsequencesofinvestigationsor

treatmentsyoupropose,aswellastheconsequencesofnothaving

treatment.Onlyiftheyareabletounderstand,retain,useandweighthis

information,andcommunicatetheirdecisiontoothers,cantheyconsentto

aninvestigationortreatment.



100 Thecapacitytoconsentdependsmoreonyoungpeople’sabilityto

understandandweighupoptionsthanonage.Whenassessingayoung

person’scapacitytoconsent,youshouldbearinmindthat:

(a)at16ayoungpersoncanbepresumedtohavecapacitytoconsent

(b)ayoungpersonunder16mayhavethecapacitytoconsent,depending

ontheirmaturityandabilitytounderstand.

101 Itisimportantthatyouassessmaturityandunderstandingonanindividual

basis,andwithregardtothecomplexityandimportanceofthedecisionto

bemade.Youshouldrememberthatayoungpersonwhohasthecapacity

toconsenttostraightforward,relativelyrisk-freetreatmentmaynot

necessarilyhavethecapacitytoconsenttocomplextreatmentinvolving

highrisksorseriousconsequences.Thecapacitytoconsentcanalsobe

affectedbytheirphysicalandemotionaldevelopmentandbychangesin

theirhealthandtreatment.

102 Youshouldlistentoandrespectchildrenandyoungpeople’sviews

abouttheirhealthandconsiderhowbesttosupportthemtoreachan

understandingoftheclinicalissues,sofarastheyareable.Youshould

involvethemasmuchaspossibleindiscussionsabouttheircare,whether

ornottheyareabletomakedecisionsforthemselves.Youshouldnot

withholdinformationabouttheirdiagnosisandprognosisthattheyareable

tounderstand,unlesstheyaskyouto,orifyoujudgethatgivingitmight

causethemseriousharm.Inthiscontext‘seriousharm’meansmorethan

thatthechildmightbecomeupsetordecidetorefusetreatment.



103 Youshouldworkconstructivelywiththechildoryoungpersonifpossible,

andwiththeirparentsorcarersandothermembersofthehealthcare

team,andstrivetoreachaconsensusontreatmentoptionsandonwhat

courseofactionwouldbeintheirbestinterests.Youshouldbeawareof

thearrangementsforadvocacyxxvandmediationwhereyouworksothat

youcanadvisethechildandtheirparentswheretogethelpandsupportin

makingtheirdecisioniftheywantorneedit.

Children and young people who lack capacity

104 Ifachildlackscapacitytoconsent,youshoulddiscusswiththeirparents

thetreatmentsyouassesstobeclinicallyappropriate,andseektheir

consenttothetreatmenttheyjudgetobeinthechild’sbestinterests.Itis

usuallysufficienttohaveconsentfromoneparent,butifmorethanone

personholdsparentalauthorityyoushouldencouragethemtoreacha

consensus.Ifafterdiscussion,youandtheparentsreachaconsensusthat

life-prolongingtreatmentwouldnotbeinthechild’sbestinterestsand

thetreatmentiswithdrawnornotstarted,youmustmakesurethatany

distressingsymptomsareaddressedandthechildiskeptascomfortable

aspossible.Youmustmonitorthechild’sconditionandbepreparedto

reassessthebenefits,burdensandrisksoftreatmentinlightofchangesin

theircondition.Youmustkeeptheparentsfullyinvolved.



105 Ifayoungpersonaged16or17lackscapacity,inScotlandyoucanmake

decisionsonthesamebasisasforanadultwholackscapacitytodecide

(seeparagraphs15-16).InEngland,WalesandNorthernIreland,youshould

followtheguidanceatparagraph104,butifaparentisnotavailableyou

canmakethedecisionabouttreatmentandcarefollowingtheguidanceat

paragraph16(f).

Neonates and infants

106 Itmaybeparticularlydifficulttomakeadecisiononthebasisofwhatisin

thebestinterestsofaneonateorinfant.If,whenconsideringthebenefits,

burdensandrisksoftreatment(includingresuscitationandclinically

assistednutritionandhydration)youconcludethat,althoughproviding

treatmentwouldbelikelytoprolonglife,itwouldcausepain,suffering

andotherburdensthatwouldoutweighanybenefitsandyoureacha

consensuswiththechild’sparentsandhealthcareteamthatitwouldbein

thechild’sbestintereststowithdraw,ornotstartthetreatment,youmay

doso.However,inthecaseofdecisionsaboutclinicallyassistednutrition

andhydration,beforeyoureachadefinitedecisiontowithdrawornotto

starttreatment,youmustseekasecondopinion(or,ifthisisnotpossible,

advice)followingtheguidanceatparagraph121.Whateverdecisionis

made,youmustmakesurethatanydistressingsymptomsthatthechild

maybeexperiencingaremanagedeffectivelyandthatthechild’scondition

isreviewedregularly.



Parents’ concerns and anxieties

107 Youshouldbesensitivetotheconcernsandanxietiesthatparentsmay

havewhendecisionshavetobemadeaboutwithdrawingornotstarting

potentiallylife-prolongingtreatment.Forexample,parentsmayfeel

responsibleforanyadverseoutcomesandwantreassurancethatall

appropriatetreatmentfortheirchildisbeingoffered.Youmustlistento

theirconcerns,considercarefullytheirviewsaboutchangesintheirchild’s

condition,andmakesuretheyhaveaccesstoinformationorsupportifthey

needorwantit.Youshouldtrytomakesurethattheyreceiveconsistent,

clearmessagesabouttheirchild’scareorconditionfromdifferentmembers

ofthehealthcareteam.


108 Ifdisagreementsariseaboutwhatcourseofactionwouldbeinachild

oryoungperson’sbestinterests,itisusuallypossibletoresolvethemby,

forexample,involvinganindependentadvocate;seekingadvicefroma

moreexperiencedcolleague;obtaininganindependentsecondopinion;

byholdingacaseconferenceorethicsconsultation;orbyusinglocal

mediationservices.If,aftertakingsuchsteps,significantdisagreement

remains,youshouldseeklegaladviceonapplyingtotheappropriate

courtforanindependentruling.Approachingthecourtshouldbeseen

asaconstructivewayofthoroughlyexploringtheissuesandproviding

reassuranceforthechildandparentsthatthechild’sinterestshavebeen

properlyconsideredinthedecision.



109 Allpatientsareentitledtofoodanddrinkofadequatequantityandquality

andtothehelptheyneedtoeatanddrink.Malnutritionanddehydration

canbebothacauseandconsequenceofillhealth,somaintainingahealthy

levelofnutritionandhydrationcanhelptopreventortreatillnessand

symptomsandimprovetreatmentoutcomesforpatients.Youmustkeep

thenutritionandhydrationstatusofyourpatientsunderreview.Youshould

besatisfiedthatnutritionandhydrationarebeingprovidedinawaythat

meetsyourpatients’needs,andthatifnecessarypatientsarebeinggiven

adequatehelptoenablethemtoeatanddrink.

110 Ifapatientrefusesfoodordrink31,orhasproblemseatingordrinking,you

shouldfirstassessandaddressanyunderlyingphysicalorpsychological

causesthatcouldbeimprovedwithtreatmentorcare.Forexample,some

patientsstopeatingbecauseofdepression,orpaincausedbymouth

ulcersordentures,orforotherreasonsthatcanbeaddressed.Ifapatient

needsassistanceineatingordrinkingthatisnotbeingprovided,orif

underlyingproblemsarenotbeingeffectivelymanaged,youshouldtake

stepstorectifythesituation,ifyoucan.Ifyoucannot,youshouldinform

anappropriatepersonwithintheorganisationthatisresponsibleforthe

patient’scare.

Meeting patients’ nutrition and hydration needs

31 Theofferoffoodanddrinkbymouthispartofbasiccare(asistheofferofwashingandpainrelief)andmust alwaysbeofferedtopatientswhoareabletoswallowwithoutseriousriskofchokingoraspiratingfoodordrink. Foodanddrinkcanberefusedbypatientsatthetimeitisoffered,butanadvancerefusaloffoodanddrinkhas noforce.



111 Ifyouareconcernedthatapatientisnotreceivingadequatenutritionor

hydrationbymouth,evenwithsupport,youmustcarryoutanassessment

oftheirconditionandtheirindividualrequirements.Youmustassesstheir

needsfornutritionandhydrationseparatelyandconsiderwhatformsof

clinicallyassistednutritionorhydrationmayberequiredtomeettheir

needs.xxvi



112 Clinicallyassistednutritionincludesintravenousfeeding,andfeedingby

nasogastrictubeandbypercutaneousendoscopicgastrostomy(PEG)

andradiologicallyinsertedgastrostomy(RIG)feedingtubesthroughthe

abdominalwall.Allthesemeansofprovidingnutritionalsoprovidefluids

necessarytokeeppatientshydrated.Clinicallyassistedhydrationcanalso

beprovidedbyintravenousorsubcutaneousinfusionoffluidsthrough

a‘drip’.Theterms‘clinicallyassistednutrition’and‘clinicallyassisted

hydration’donotrefertohelpgiventopatientstoeatordrink,forexample

byspoonfeeding.

113 Providingnutritionandhydrationbytubeordripmayprovidesymptom

relief,orprolongorimprovethequalityofthepatient’slife;butthey

mayalsopresentproblems.xxviiThecurrentevidenceaboutthebenefits,

burdensandrisksofthesetechniquesaspatientsapproachtheendof

lifeisnotclear-cut.xxviiiThiscanleadtoconcernsthatpatientswhoare

unconsciousorsemi-consciousmaybeexperiencingdistressingsymptoms

andcomplications,orotherwisebesufferingeitherbecausetheirneedsfor

nutritionorhydrationarenotbeingmetorbecauseattemptstomeettheir

perceivedneedsfornutritionorhydrationmaybecausingthemavoidable

suffering.

114 Nutritionandhydrationprovidedbytubeordripareregardedinlawas

medicaltreatment32,andshouldbetreatedinthesamewayasother

medicalinterventions.Nonetheless,somepeopleseenutritionand

hydration,whethertakenorallyorbytubeordrip,aspartofbasicnurture

Clinically assisted nutrition and hydration

32 AiredaleNHSTrustvBland[1993]1AllER821.



forthepatientthatshouldalmostalwaysbeprovided.Forthisreasonitis

especiallyimportantthatyoulistentoandconsidertheviewsofthepatient

andofthoseclosetothem(includingtheirculturalandreligiousviews)and

explaintheissuestobeconsidered,includingthebenefits,burdensandrisks

ofprovidingclinicallyassistednutritionandhydration.Youshouldmake

surethatpatients,thoseclosetothemandthehealthcareteamunderstand

that,whenclinicallyassistednutritionorhydrationwouldbeofoverall

benefit,itwillalwaysbeoffered;andthatifadecisionistakennotto

provideclinicallyassistednutritionorhydration,thepatientwillcontinueto

receivehigh-qualitycare,withanysymptomsaddressed.

115 Ifdisagreementarisesbetweenyouandthepatient(orthoseclosetoa

patientwholackscapacity),oryouandothermembersofthehealthcare

team,orbetweentheteamandthoseclosetothepatient,aboutwhether

clinicallyassistednutritionorhydrationshouldbeprovided,youshould

seekresolutionfollowingtheguidanceinparagraphs47-49.Youshould

makesurethatthepatient,orsomeoneactingontheirbehalf,isinformed

andgivenadviceonthepatient’srightsandhowtoaccesstheirownlegal

adviceorrepresentation.

Patients who have capacity33

116 Ifyouconsiderthatapatientisnotreceivingadequatenutritionor

hydrationbymouth,youshouldfollowthedecisionmodelinparagraph14.

Youmustassessthepatient’snutritionandhydrationneedsseparatelyand

33 Additionalconsiderationsapplytodecisionsaboutclinicallyassistednutritionandhydrationinvolvingchildren andyoungpeoplewithcapacity(seeparagraphs90-103).



offerthepatientthosetreatmentsyouconsidertobeclinicallyappropriate

because,forexample,theywouldprovidesymptomrelieforwouldbelikely

toprolongthepatient’slife.Youmustexplaintothepatientthebenefits,

burdensandrisksassociatedwiththetreatments,sothatthepatientcan

makeadecisionaboutwhethertoacceptthem.

117 Ifyouassessthatclinicallyassistednutritionorhydrationwouldnot

beclinicallyappropriate,youmustmonitorthepatient’sconditionand

reassessthebenefits,burdensandrisksofprovidingclinicallyassisted

nutritionorhydrationasthepatient’sconditionchanges.Ifapatientasks

youtoprovidenutritionorhydrationbytubeordrip,youshoulddiscussthe

issueswiththepatientandexplorethereasonsfortheirrequest.Youmust

reassessthebenefitsandburdensofprovidingthetreatmentrequested,

givingweighttothepatient’swishesandvalues.Whenthebenefits,

burdensandrisksarefinelybalanced,thepatient’srequestwillusuallybe

thedecidingfactor.However,ifafterdiscussionyoustillconsiderthatthe

treatmentwouldnotbeclinicallyappropriate,youdonothavetoprovide

it.Butyoushouldexplainyourreasonstothepatientandexplainanyother

optionsthatareavailable,includingtheoptiontoseekasecondopinion.

Adult patients who lack capacity34

118 Ifapatientlackscapacityandcannoteatordrinkenoughtomeettheir

nutritionorhydrationneeds,youmustassesswhetherprovidingclinically

assistednutritionorhydrationwouldbeofoverallbenefittothem,

followingthedecisionmodelinparagraph16andguidanceinparagraphs

40-48.Clinicallyassistednutritionorhydrationwillusuallybeofoverall

34 Generaladviceonchildrenwholackcapacityisinthesectiononneonates,childrenandyoungpeople.Decisions aboutclinicallyassistednutritionandhydrationinvolvingneonatesandinfantsarediscussedatparagraph106.



benefit,ifforexampletheyprolonglifeorprovidesymptomrelief.Youmust

assessthepatient’snutritionandhydrationneedsseparately.Youmust

monitorthepatient’scondition,andreassessthebenefits,burdensand

risksofprovidingclinicallyassistednutritionorhydrationasthepatient’s

conditionchanges.

Adult patients who lack capacity and are not expected to die within hours or days

119 Ifapatientisintheendstageofadiseaseorcondition,butyoujudgethat

theirdeathisnotexpectedwithinhoursordays,youmustprovideclinically

assistednutritionorhydrationifitwouldbeofoverallbenefittothem,

takingintoaccountthepatient’sbeliefsandvalues,anypreviousrequestfor

nutritionorhydrationbytubeordripandanyotherviewstheypreviously

expressedabouttheircare.Thepatient’srequestmustbegivenweightand,

whenthebenefits,burdensandrisksarefinelybalanced,willusuallybethe

decidingfactor.

120 Youmustassessthepatient’snutritionandhydrationneedsseparately.

Ifyoujudgethattheprovisionofclinicallyassistednutritionorhydration

wouldnotbeofoverallbenefittothepatient,youmayconcludethatthe

treatmentshouldnotbestartedatthattimeorshouldbewithdrawn.You

shouldexplainyourviewtothepatient,ifappropriate,andthosecloseto

them,andrespondtoanyquestionsorconcernstheyexpress.

121 Inthesecircumstancesyoumustmakesurethatthepatient’sinterests

havebeenthoroughlyconsidered.Thismeansyoumusttakeallreasonable

stepstogetasecondopinionfromaseniorclinician(whomightbefrom



anotherdiscipline)whohasexperienceofthepatient’sconditionbutwho

isnotalreadydirectlyinvolvedinthepatient’scare.Thisopinionshould

bebasedonanexaminationofthepatientbytheclinician.Inexceptional

circumstances,ifthisisnotpossibleforpracticalreasons,youmuststillget

advicefromacolleague,forexamplebytelephone,havinggiventhem

up-to-dateinformationaboutthepatient’scondition.Youshouldalso

considerseekinglegaladvice.35

122 Ifyoureachaconsensusthatclinicallyassistednutritionorhydrationwould

notbeofoverallbenefittothepatientandthetreatmentiswithdrawn

ornotstarted,youmustmakesurethatthepatientiskeptcomfortable

andthatanydistressingsymptomsareaddressed.Youmustmonitorthe

patient’sconditionandbepreparedtoreassessthebenefits,burdensand

risksofprovidingclinicallyassistednutritionorhydrationinlightofchanges

intheircondition.Ifclinicallyassistednutritionorhydrationisstartedor

reinstatedafteralaterassessment,andyousubsequentlyconcludethatit

wouldnotbeofoverallbenefittocontinuewiththetreatment,youmust

seekasecondopinion(or,ifthisisnotpossible,seekadvice),followingthe

adviceinparagraph121.

Adult patients who lack capacity and are expected to die within hours or days

123 Ifapatientisexpectedtodiewithinhoursordays,andyouconsiderthat

theburdensofprovidingclinicallyassistednutritionorhydrationoutweigh

thebenefitstheyarelikelytobring,itwillnotusuallybeappropriateto

35 Youcandiscusstheoptionswithyourdefenceorganisationoryouremployer’slegaldepartment.In NorthernIreland,wherethereiscurrentlynoprimarylegislationorrelevantcaselawpertainingtothe jurisdiction,itmaybeparticularlyimportanttodosobeforeactingondecisions.



startorcontinuetreatment.Youmustconsiderthepatient’sneedsfor

nutritionandhydrationseparately.

124 Ifapatienthaspreviouslyrequestedthatnutritionorhydrationbeprovided

untiltheirdeath,orthoseclosetothepatientaresurethatthisiswhatthe

patientwanted,thepatient’swishesmustbegivenweightand,whenthe

benefits,burdensandrisksarefinelybalanced,willusuallybethedeciding

factor.

125 Youmustkeepthepatient’sconditionunderreview,especiallyiftheylive

longerthanyouexpected.Ifthisisthecase,youmustreassessthebenefits,

burdensandrisksofprovidingclinicallyassistednutritionorhydration,as

thepatient’sconditionchanges.

Patients in a persistent vegetative state (PVS) or similar condition

126 Ifyouareconsideringwithdrawingnutritionorhydrationfromapatient

inPVSoraconditioncloselyresemblingPVS,thecourtsinEngland,Wales

andNorthernIrelandcurrentlyrequirethatyouapproachthemforaruling.

ThecourtsinScotlandhavenotspecifiedsucharequirement,butyou

shouldseeklegaladviceonwhetheracourtrulingmaybenecessaryinan

individualcase.

Conscientious objection

127 Ifyouhaveaconscientiousobjectiontowithdrawing,ornotproviding,

clinicallyassistednutritionorhydration,youshouldfollowtheguidancein

paragraphs79-80.



Cardiopulmonary resuscitation (CPR)

128 Whensomeonesufferssuddencardiacorrespiratoryarrest,CPRattempts

torestarttheirheartorbreathingandrestoretheircirculation.CPR

interventionsareinvasiveandincludechestcompressions,electricshock

byanexternalorimplanteddefibrillator,injectionofdrugsandventilation.

Ifattemptedpromptly,CPRhasareasonablesuccessrateinsome

circumstances.Generally,however,CPRhasaverylowsuccessrateandthe

burdensandrisksofCPRincludeharmfulsideeffectssuchasribfracture

anddamagetointernalorgans;adverseclinicaloutcomessuchashypoxic

braindamage;andotherconsequencesforthepatientsuchasincreased

physicaldisability.IftheuseofCPRisnotsuccessfulinrestartingtheheart

orbreathing,andinrestoringcirculation,itmaymeanthatthepatientdies

inanundignifiedandtraumaticmanner.

When to consider making a Do Not Attempt CPR (DNACPR) decision

129 Ifcardiacorrespiratoryarrestisanexpectedpartofthedyingprocess

andCPRwillnotbesuccessful,makingandrecordinganadvancedecision

nottoattemptCPRwillhelptoensurethatthepatientdiesinadignified

andpeacefulmanner.Itmayalsohelptoensurethatthepatient’slast

hoursordaysarespentintheirpreferredplaceofcareby,forexample,

avoidingemergencyadmissionfromacommunitysettingtohospital.These

managementplansarecalledDoNotAttemptCPR(DNACPR)orders,orDo

NotAttemptResuscitationorAllowNaturalDeathdecisions.



130 IncasesinwhichCPRmightbesuccessful,itmightstillnotbeseen

asclinicallyappropriatebecauseofthelikelyclinicaloutcomes.When

consideringwhethertoattemptCPR,youshouldconsiderthebenefits,

burdensandrisksoftreatmentthatthepatientmayneedifCPRis

successful.Incaseswhereyouassessthatsuchtreatmentisunlikely

tobeclinicallyappropriate,youmayconcludethatCPRshouldnotbe

attempted.Somepatientswithcapacitytomaketheirowndecisionsmay

wishtorefuseCPR;orinthecaseofpatientswholackcapacityitmay

bejudgedthatattemptingCPRwouldnotbeofoverallbenefittothem.

However,itcanbedifficulttoestablishthepatient’swishesortoget

relevantinformationabouttheirunderlyingconditiontomakeaconsidered

judgementatthetimetheysufferacardiacorrespiratoryarrestandan

urgentdecisionhastobemade.So,ifapatienthasanexistingcondition

thatmakescardiacorrespiratoryarrestlikely,establishingamanagement

planinadvancewillhelptoensurethatthepatient’swishesandpreferences

abouttreatmentcanbetakenintoaccountandthat,ifappropriate,a

DNACPRdecisionismadeandrecorded.

131 Ifapatientisadmittedtohospitalacutelyunwell,orbecomesclinically

unstableintheirhomeorotherplaceofcare,andtheyareatforeseeable

riskofcardiacorrespiratoryarrest,ajudgementaboutthelikelybenefits,

burdensandrisksofCPRshouldbemadeasearlyaspossible.xxix



Discussions about whether to attempt CPR

132 Aswithothertreatments,decisionsaboutwhetherCPRshouldbe

attemptedmustbebasedonthecircumstancesandwishesoftheindividual

patient.Thismayinvolvediscussionswiththepatientorwiththoseclose

tothem,orboth,aswellasmembersofthehealthcareteam.Youmust

approachdiscussionssensitivelyandbearinmindthatsomepatients,or

thoseclosetothem,mayhaveconcernsthatdecisionsnottoattemptCPR

mightbeinfluencedbypoorlyinformedorunfoundedassumptionsabout

theimpactofdisabilityoradvancedageonthepatient’squalityoflife.

133 IfapatientlackscapacitytomakeadecisionaboutfutureCPR,theviews

ofmembersofthehealthcareteaminvolvedintheircaremaybevaluable

inassessingthelikelyclinicaleffectivenessofattemptingCPRandwhether

successfulCPRislikelytobeofoverallbenefit.Youshouldmakeevery

efforttodiscussapatient’sCPRstatuswiththesehealthcareprofessionals.

When CPR will not be successful

134 Ifapatientisatforeseeableriskofcardiacorrespiratoryarrestandyou

judgethatCPRshouldnotbeattempted,becauseitwillnotbesuccessful

inrestartingthepatient’sheartandbreathingandrestoringcirculation,

youmustcarefullyconsiderwhetheritisnecessaryorappropriatetotell

thepatientthataDNACPRdecisionhasbeenmade.Youshouldnotmake

assumptionsaboutapatient’swishes,butshouldexploreinasensitive

wayhowwillingtheymightbetoknowaboutaDNACPRdecision.While

somepatientsmaywanttobetold,othersmayfinddiscussionabout



interventionsthatwouldnotbeclinicallyappropriateburdensomeand

oflittleornovalue.Youshouldnotwithholdinformationsimplybecause

conveyingitisdifficultoruncomfortableforyouorthehealthcareteam.

135 Ifyouconcludethatthepatientdoesnotwishtoknowaboutordiscuss

aDNACPRdecision,youshouldseektheiragreementtosharewiththose

closetothem,withcarersandwithothers,theinformationtheymayneed

toknowinordertosupportthepatient’streatmentandcare.

136 Ifapatientlackscapacity,youshouldinformanylegalproxyandothers

closetothepatientabouttheDNACPRdecisionandthereasonsforit.

When CPR may be successful

Patients who have capacity137 IfCPRmaybesuccessfulinrestartingapatient’sheartandbreathing

andrestoringcirculation,thebenefitsofprolonginglifemustbeweighed

againstthepotentialburdensandrisks.Butthisisnotsolelyaclinical

decision.Youshouldofferthepatientopportunitiestodiscuss(withsupport

iftheyneedit)whetherCPRshouldbeattemptedinthecircumstances

thatmaysurroundafuturecardiacorrespiratoryarrest.Youmustapproach

thissensitivelyandshouldnotforceadiscussionorinformationontothe

patientiftheydonotwantit.However,iftheyarepreparedtotalkaboutit,

youmustprovidethemwithaccurateinformationabouttheburdensand

risksofCPRinterventions,xxxincludingthelikelyclinicalandotheroutcomes

ifCPRissuccessful.Thisshouldincludesensitiveexplanationoftheextent

towhichotherintensivetreatmentsandproceduresmaynotbeseenas



clinicallyappropriateaftersuccessfulCPR.Forexample,insomecases,

prolongedsupportformulti-organfailureinanintensivecareunitmaynot

beclinicallyappropriateeventhoughthepatient’shearthasbeenrestarted.

138 Youshouldexplain,inasensitivemanner,anydoubtsthatyouandthe

healthcareteammayhaveaboutwhethertheburdensandrisksofCPR

wouldoutweighthebenefits,includingwhetherthelevelofrecovery

expectedaftersuccessfulCPRwouldbeacceptabletothepatient.

139 SomepatientsmaywishtoreceiveCPRwhenthereisonlyasmallchance

ofsuccess,inspiteoftheriskofdistressingclinicalandotheroutcomes.Ifit

isyourconsideredjudgementthatCPRwouldnotbeclinicallyappropriate

forthepatient,youshouldmakesurethattheyhaveaccurateinformation

aboutthenatureofpossibleCPRinterventionsxxxiand,forexample,the

lengthofsurvivalandlevelofrecoverythattheymightrealisticallyexpectif

theyweresuccessfullyresuscitated.Youshouldexplorethereasonsfortheir

requestandtrytoreachagreement;forexample,limitedCPRinterventions

couldbeagreedinsomecases.Whenthebenefits,burdensandrisksare

finelybalanced,thepatient’srequestwillusuallybethedecidingfactor.

If,afterdiscussion,youstillconsiderthatCPRwouldnotbeclinically

appropriate,youarenotobligedtoagreetoattemptitinthecircumstances

envisaged.Youshouldexplainyourreasonsandanyotheroptionsthatmay

beavailabletothepatient,includingseekingasecondopinion.



Patients who lack capacity 140 IfapatientlackscapacitytomakeadecisionaboutfutureCPR,youshould

consultanylegalproxywhohasauthoritytomakethedecisionforthe

patient.Ifthereisnolegalproxywithrelevantauthority,youmustdiscuss

theissuewiththoseclosetothepatientandwiththehealthcareteam.In

yourconsultationsordiscussions,youmustfollowthedecision-making

modelinparagraph16.Inparticular,youshouldbeclearabouttherole

thatothersarebeingaskedtotakeinthedecision-makingprocess.Ifthey

donothavelegalauthoritytomakethedecision,youshouldbeclearthat

theirroleistoadviseyouandthehealthcareteamaboutthepatient.You

mustnotgivethemtheimpressionthatitistheirresponsibilitytodecide

whetherCPRwillbenefit,orbeinthebestinterestsof,thepatient.You

shouldprovideanylegalproxyandthoseclosetothepatient,withthe

sameinformationaboutthenatureofCPRandtheburdensandrisksforthe

patientasexplainedinparagraphs137-138.

141 IfthelegalproxyrequeststhatCPRwithasmallchanceofsuccessis

attemptedinfuture,inspiteoftheburdensandrisks,ortheyaresurethat

thisiswhatthepatientwanted,anditisyourconsideredjudgementthat

CPRwouldnotbeclinicallyappropriateandnotofoverallbenefitforthe

patient,youshouldexplorethereasonsfortheproxy’srequest.Ifafter

furtherdiscussionyoustillconsiderthatattemptingCPRwouldnotbeof

overallbenefitforthepatient,youarenotobligedtooffertoattemptCPR

inthecircumstancesenvisaged.Youshouldexplainyourreasonsandany

otheroptionsthatmaybeavailabletothelegalproxy,includingtheirright

toseekasecondopinion.




142 IfthereisdisagreementaboutwhetherCPRshouldbeprovided,youshould

trytoresolveitbyfollowingtheguidanceinparagraphs47-49.

Recording and communicating CPR decisions

143 Anydiscussionswithapatient,orwiththoseclosetothem,aboutwhether

toattemptCPR,andanydecisionsmade,shouldbedocumentedinthe

patient’srecordoradvancecareplan.36IfaDNACPRdecisionismadeand

therehasbeennodiscussionwiththepatientbecausetheyindicatedawish

toavoidit,orbecauseitwasyourconsideredviewthatdiscussionwiththe

patientwasnotappropriate,youshouldnotethisinthepatient’srecords.

Treatment and care after a DNACPR decision

144 Youmustmakeitcleartothepatient,tothoseclosetothemandto

membersofthehealthcareteamthataDNACPRdecisionappliesonlyto

CPR.Itdoesnotimplythatothertreatmentswillbestoppedorwithheld.

Othertreatmentandcarewillbeprovidedifitisclinicallyappropriateand

agreedtobyapatientwithcapacity,orifitisofoverallbenefittoapatient

wholackscapacity.

36 Seetheguidanceonrecordingandcommunicatingdecisionsinparagraphs75-77.



145 ADNACPRdecisionshouldnotoverrideyourclinicaljudgementaboutCPR

ifthepatientexperiencescardiacorrespiratoryarrestfromareversible

cause,suchastheinductionofanaesthesiaduringaplannedprocedure,orif

thecircumstancesofthearrestarenotthoseenvisagedwhentheDNACPR

decisionwasmade.

Emergencies and CPR

146 Emergenciescanarisewhenthereisnotimetomakeaproperassessment

ofthepatient’sconditionandthelikelyoutcomeofCPR;whennoprevious

DNACPRdecisionisinplace;andwhenitisnotpossibletofindoutthe

patient’sviews.Inthesecircumstances,CPRshouldbeattempted,unless

youarecertainyouhavesufficientinformationaboutthepatienttojudge

thatitwillnotbesuccessful.



References

i TheGold Standards Framework‘prognosticindicator’isoneexampleofatool

thathelpswithendoflifeprognosis(www.goldstandards framework.

nhs.ukandwww.gsfs.scot.nhs.uk).SeealsotheNorthernIrelandCancer

Network(2008)Diagnosing Dying – defining end of life care; supportive and

palliative care network group(www.cancerni net).

ii Therearemanypublicationsonassessingandmeetingpatients’palliative

careneeds.Examplesofnationalguidanceinclude:Changing Gear –

guidelines for managing the last days of life in adults (2006),NationalCouncil

forPalliativeCare;Principles of Pain Control in Palliative Care for Adults,

WorkingPartyreport,RoyalCollegeofPhysiciansofLondon;Control of

Pain in Adults with Cancer,Guideline106(2008),ScottishIntercollegiate

GuidelineNetwork;Clinical practice guidelines for quality palliative care,

Nationalconsensusprojectforqualitypalliativecare(NorthernIreland)

(www.nationalconsensusproject.org).

iii Forinformationaboutpatientandcarersupportandadvocacyservices,

counsellingandchaplaincyservicesandclinicalethicssupportnetworks,

seetheadviceandresourceslistedatwww.endoflifecareforadults.nhs.uk

andatwww.pallcareni.net

iv Examplesofnationalguidanceaboutresponsestoresourceissuesinclude:

Supporting rational decision making about medicines (and treatments).

A handbook of good practice (Firstedition,Feb2009),NHSNational

PrescribingCentre(www.npc.co.uk);Guidance on NHS patients who wish

to pay for additional private care (March2009),DepartmentofHealth

(England)(www.dh.gov.uk).


v Examplesofresourcesthathelpdoctorstoaddressthehealthinequalities

affectingsomepatientgroupsinclude:Equal treatment: closing the gap.

Information for practitioners(2006)andSupplement to Good Medical

Practice (2007)bytheDRCandavailablefromtheEqualityandHuman

RightsCommission(www.equalityhumanrights.com);Living and dying

with dignity – best practice guide to end of life care for people with a learning

disability(2008)Mencap(www.mencap.org.uk).SeealsotheNHSnational

serviceframeworksforolderpeopleandchildrenandyoungpeople.

vi Therearevariouspublicationssettingoutthebenefitsofadvancecare

planning,examplesinclude: Joined up thinking. Joined up care. Increasing

access to palliative care for people with life-threatening conditions other

than cancer (Nov2006)bytheScottishPartnershipforPalliativeCare.The

fourUKgovernmentshavepublishednationalstrategiesandactionplans

toimproveaccesstoendoflifeandpalliativecarewhichdiscusstherole

ofadvancecareplanning.SeetheEnd of Life Care Strategy – Promoting

High Quality Care for All Adults at the End of Life(2008)DH,England(www.

dh.gov.uk);Living and Dying Well – A National Action Plan for End of Life Care

in Scotland(2008)bytheScottishGovernment(www.scotland.gov.uk);

Report to Minister for Health and Social Services on Palliative Care Services

(2008)(www.wales.nhs.uk);Living Matters. Dying Matters: A Palliative and

End of Life Care Strategy for Adults in Northern Ireland (2010)DHSSPS(www.

pallcareni.net).

vii Anumberofreportshavebeenpublishedabouttheneedsandpreferences

ofparticularpatientgroupsinrelationtoendoflifetreatmentandcare.

Examplesinclude:Dying in older age: reflections and experiences from an

older person’s perspective (2005)byHelptheAged(www.helptheaged.

org.uk);Ethnicity, Older People and Palliative Care (2006)byNational




CouncilforPalliativeCareandthePolicyResearchInstituteonAgeingand

Ethnicity,London;An ordinary death: the service needs of people with learning

disabilities who are dying (2003)bytheFoundationforPeoplewithLearning

Disabilities(www.learningdisabilities.org.uk);Better care. Better lives.

Improving outcomes for children and young people and their families living

with life-limiting and life-threatening conditions (2008)DHEngland(www.

dh.gov.uk).

viii Examplesofnationalguidanceonhowtoapproachadvancecareplanning

include:Advance care planning: national guidelines (2009)RoyalCollegeof

PhysiciansofLondon;Advance care planning: a guide for health and social

care staff(Aug2008)(www.endoflifecareforadults.nhs.uk);Ascertaining

wishes: a good practice guide. Advance care planning for care homes for older

peopleisavailablefromCounselandCare(www.counselandcare.org.uk).

TheBMAhaspublishedguidancecoveringthisandotherissuesinendoflife

treatmentandcareinWithholding and withdrawing life-prolonging medical

treatment: guidance for decision making (2007)(www.bma.org.uk).

ix Advicefordoctorsandpatientsaboutmakingformalrecordsofadvance

refusalsoftreatmentisavailablefromtheAdvanceDecisionstoRefuse

Treatmentwebsite(www.adrtnhs.co.uk);theOfficeofthePublicGuardian

(EnglandandWales)(www.publicguardian.gov.uk)andinScotland(www.

publicguardian-scotland.gov.uk);andtheMentalWelfareCommissionfor

Scotland(www.mwcs.org.uk).Manypatientsupportorganisationsalso

provideadvice.TheBMAhaspublishedguidancefordoctorsinAdvance

decisions and proxy decision making in medical treatment and research(2007)

(www.bma.org.uk).



x TheGold Standards Frameworkisonetoolusedtoimprovecollaboration

amongcarehomes,GPs,primarycareteamsandspecialistpalliativecare

teams,andtoreducethenumberofadmissionstohospitalinthelastdaysof

life.Itisavailableatwww.goldstandardsframework.nhs.ukandatwww.

gsfs.scot.nhs.uk.Teams without Walls(2008)isareportbytheRoyalColleges

ofPhysicians,PaediatricsandChildHealthandGPswithadviceonintegrating

services(www.rcplondon.ac.uk).Seealsothe Out-of-hours toolkitdeveloped

byMacmillanCancerCare(www.learnzone.macmillan.org.uk).

xi Collaborationacrossdifferenthealthandsocialcaresettingsmaybe

helpedbycurrentorplannedintroductionof‘localityregisters’forpatients

receivingendoflifecareinEngland;e-palliativecarerecordsinScotland;

andtheproposede-recordinNorthernIreland.

xii Structureddecisionmakingandreviewofapatient’scareinthelastdays

oflifecanbesupportedbytoolssuchastheLiverpool Care Pathwaywhich

isavailableatwww.mcpcil.org.ukandwww.endoflifecareforadults.nhs.

uk;andtheAll Wales Care Pathway for the Last days of Life,WelshAssembly

Government,inWelshHealthCircular(2006)030.

xiii Patientsmayhaverecordedtheirwishesaboutorganortissuedonation

intheNHSOrganDonorRegisterheldbyNHSBloodandTransplant(www.

nhsbt.nhs.uk).Guidanceontheissuesthatmaybeofconcerntofamilies

canbefoundinpublicationssuchasDonor Family Care Policy (2004)and

Organ donation and religious perspectives (2010)byNHSBloodandTransplant.

xiv SeepublicationsonDonor Family Care Policy(2004)andOrgan donation

and religious perspectives(2010),andotherguidesfromNHSBloodand

Transplantatwww.nhsbt.nhs.uk



xv SeetheHuman Tissue Act 2004 and Human Tissue (Scotland) Act 2006.

xvi Human Tissue Authority Code of Practice 1: Consent(2009),Code of Practice

2: Donation of solid organs for transplantation (2009)(www.hta.gov.uk).

xvii TheLiverpool Care Pathwayisonesourceofadviceonmeetingthespiritual

andotherpersonalneedsofpatientsandtheircarersinthelastdaysoflife

andintobereavement.Itisavailableatwww.endoflifecareforadults.nhs.uk.

SeealsotheAll Wales Care Pathway for the Last Days of Life.WelshAssembly

Government,inWelshHealthCircular(2006)030.Adviceisalsoavailable

fromtheMulti-faithGroupforHealthcareChaplaincy(www.mfghc.com).

xviii Helpinsupportingbereavedadultsandchildrenisavailablefroma

numberofsources,includingtheChildBereavementCharity(www.

childbereavement.org.uk);CruseBereavementCare(www.cruseber

eavementcare.org.uk)andCruseScotland(www.crusescotland.org.uk).

xix Informationandguidanceonthestatutoryrequirementsforcompletingdeath

andcremationcertificatesisavailablefromanumberofsourcesincluding:

HomeOfficeGuidance for doctors completing Medical Certificates of Cause of

Death in England and Wales(www.gro.gov.uk/medcert/);MinistryofJustice

Cremation Regulations Guidance for doctors(2008)(www.justice.gov.uk);

ScottishGuidance on completion of medical certificates of the cause of death

(Sep2009)(www.sehd.scot.nhs.uk/cmo/CMO(2009)10.pdf).Northern

IrelandGuidance on death, stillbirth and cremation certificationisavailableat

www.dhsspsni.gov.ukandinformationforfamiliesRegistering a deathcanbe

foundatwww.groni.gov.uk



xx Comprehensiveinformationforprofessionalsandparentsaboutcertifying

thedeathofababycanbefoundin Pregnancy, loss and the death of a baby

bySANDS,thestillbirthandneonataldeathcharity(www.uk-sands.org).

Guidancetosupportpractitionersinspeakingtoapatient’sfamilyisalso

availablefromarangeoforganisations,includingtheGeneralRegisterOffices.

xxi HumanTissueAuthorityCode of practice 3: Post-mortem examination(www.

hta.gov.uk).TheCrownOfficeandProcuratorFiscalService(Scotland)

adviceonpost-mortems(www.copfs.gov.uk).MinistryofJusticeA guide to

coroners and inquests (Jan2010)(www.justice.gov.uk).

xxii Therearemanysourcesofadvice,andexamplesofnationalguidelines

include:The Management of Babies born extremely preterm at less than 26

weeks of gestation. A framework for clinical practice at the time of birth(Oct

2008)BritishAssociationofPerinatalMedicine(www.bapm.org);Nuffield

CouncilonBioethicsCritical care decisions in fetal and neonatal medicine:

ethical issues(November2006)(www.nuffieldbioethics.org).

xxiii Examplesofnationalguidelinesonendoflifetreatmentandcareforchildren

andyoungpeopleinclude:Withholding and withdrawing life-sustaining

treatment in children. A framework for practice(2ndedition2004–currently

underreview).RoyalCollegeofPaediatricsandChildHealth(www.rcpch.

ac.uk).BMA(3rdedition2007)Withholding and withdrawing life-prolonging

medical treatment: guidance for decision making.SeePart7:Decisionmaking

byyoungpeoplewithcapacity(pp83-95)andPart8:Decisionmakingfor

childrenandyoungpeoplewholackcapacity(pp96-108).SeealsotheNHS

Toolkit for high quality neonatal services(2009)(www.dh.gov.uk).



xxiv ParentsupportorganisationssuchasBliss(www.bliss.org.uk),TinyLife

(www.tinylife.org.uk)andCerebra(www.cerebra.org.uk)publishleaflets

andgivetelephonesupport.SeeforexampletheBlissleafletHelping you

with intensive care decisions for your baby(2010).

xxv Forinformationaboutorganisationsprovidingadvocacyandsupportfor

childrenandparentsseeAdvocating for children(January2009)bythe

RoyalCollegeofPaediatricsandChildHealth(www.rcpch.ac.uk).Patient

AdviceandLiaisionservices(England)providesupport,adviceand

mediationforchildren,parentsandothercarers.Helpisavailablefrom

CommunityHealthCouncils(Wales)(www.communityhealthcouncils

org.uk).ForinformationonindependentadvocacyinScotlandvisit

PartnersinAdvocacy(www.partnersinadvocacy.org.uk).ForNorthern

Irelandchildren’sadvocacyservicesvisitwww.niccy.org.ChildrenFirst

forHealthisanNHSonlineresourcetohelpchildrenandparentsshare

theirexperiencesandgetinformation(www.childrenfirst.nhs.uk).

xxvi NICEguideline Nutrition support in adults: oral nutrition support, enteral

tube feeding and parenteral nutrition (Feb2006)(www.nice.org.uk).The

BritishAssociationforParenteralandEnteralNutritionprovidesadviceon

meetingtheneedsofpatientsathomeandindifferenthealthcaresettings

(www.bapen.org.uk).Oral feeding difficulties and dilemmas: A guide to

practical care, particularly towards the end of life(Jan2010)RoyalCollegeof

Physicians,co-publishedwiththeBritishSocietyofGastroenterology

(www.rcplondon.ac.uk).

xxvii Anexplanationofthedifferenttechniquesforprovidingnutritionand

hydrationbytubeordripcanbefoundintheNICEguidelineNutrition

support in adults: oral nutrition support, enteral tube feeding and parenteral



nutrition.(Feb2006).Artificial Nutrition and Hydration: guidance in end of life

care for adults.NationalCouncilforPalliativeCare(2007).

xxviii Foradetaileddiscussionofevidenceonthebenefits,burdensandrisks

whennutritionorhydrationisprovidedbydriportube,referto Improving

Nutritional Care. A joint action plan from the Department of Health and

Nutrition Summit stakeholders(October2007)(www.dh.gov.uk).

xxix Adviceforcliniciansonwhentoattempttoresuscitate,andwhenitis

appropriatenottodoso,isavailablefromspecialistbodies,forexamplein

Cardiopulmonary resuscitation – standards for clinical practice and traininga

jointstatementfromtheRoyalCollegeofAnaesthetists,theRoyalCollege

ofPhysiciansofLondon,theIntensiveCareSocietyandtheResuscitation

Council(UK)availableatwww.resus.org.uk;Decisions relating to

cardiopulmonary resuscitation. A joint statementfrom the British Medical

Association, the Resuscitation Council (UK) and the Royal College of Nursing

(October2007)availableatwww.bma.org.uk;Integrated policy on Do Not

Attempt Cardio-pulmonary Resuscitation(2010)NHSScotland.

xxx TherearemanypatientguidesonCPRincludingguidancepublishedbythe

ResuscitationCouncilUKwhichgivesdetailsaboutimmediateandadvance

resuscitationforadults,andaboutpaediatricandnewbornlifesupport.A

model patient information leaflet isavailablefromtheirwebsitewww.resus.

org.uk.SeealsoDecisions about resuscitation. Information for patients, their

relatives and carers(2010)NHSScotland.

xxxi TheLiverpoolCarePathwayisoneevidencebasefortheeffectivenessof

CPRinthelastdaysoflife(availableatwww.mcpcil.org.ukandwww.

endoflifecareforadults.nhs.uk).



Thisannexisnotintendedtobeacomprehensivestatementofthelaworalistof

relevantlegislationandcaselaw,norisitasubstituteforup-to-datelegaladvice.

Itisforreferencepurposesonly.

Consent and capacity

TheGMCguidanceConsent: patients and doctors making decisions together (2008)

givesanoverviewofthestatuteandcaselawthataffectsalltreatmentdecisions

andtheuseoforgansandtissue,andthatrelatestoadults(withandwithout

capacitytomaketheirowndecisions),neonates,childrenandyoungpeople.

www.gmc-uk.org/guidance/ethical_guidance/consent_guidance/index.asp

The capacity legislation

TheguidancedrawsspecialattentiontotheMental Capacity Act 2005(England

andWales)anditsCodeofPractice,andtheAdults with Incapacity (Scotland) Act

2000anditsCodeofPractice.ThetwoActssetout:

n Whohaslegalauthoritytomakedecisionsonbehalfofadults(peopleaged

16andover)whentheylackcapacitytomaketheirowndecisions.

n Howadultscanmakeprovisionforfuturedecisionsbyappointingattorneys;

byrecordingstatementsoftheirpreferences;andbymakingadvancedecisions

torefusetreatment.

n Statutoryprinciplesthatmustguidethosemakingdecisionsonbehalfofan

adultwholackscapacity.

n Requirementsforsupportingadultswholackcapacityorwhohave

impairedcapacitytomakedecisions,includingtheappointmentof

independentadvocates.

n Factorstoconsiderwhenassessingaperson’scapacitytomakeaparticular

decision,includingtheirabilitytocommunicate.

Legal annex



n Factorstotakeintoaccountinreachingajudgementaboutwhatcourseof

actionwouldbeofbenefittotheperson,orintheperson’sbestinterests,ifan

adultlackscapacitytodecide.Thisincludesadviceonhowtoworkwith

advancestatementsandadvancerefusalsoftreatment.

n Statutorysafeguardstoprotectvulnerableadultsinrelationto,forexample,

seriousmedicaltreatments,researchandpossibledeprivationoftheirliberty.

n Processesforresolvingdisagreements(statutoryrequirementsinScotland)

andformakingreferralstothecourt,ifnecessary.

ItisimportantthatdoctorswhoworkinEngland,WalesandScotlandarefamiliar

withthestatutoryprinciplessetoutinthecapacitylegislationasthesemust

betakenintoaccountinhealthandsocialcaredecisionsmadeonbehalfof

adultswholackcapacity.Itisalsoimportantthatdoctorsarefamiliarwithkey

requirementsintherelevantActandsupportingCodeofPractice.

TheMental Capacity Act 2005 CodeofPracticeisastatutorycodethatdoctors

areexpectedtoobserveintheirday-to-daytreatmentandcareofadultswholack

capacitytomakeadecision.TherearedetailsoftheActandCode,andaccessto

trainingmaterialsandguidance,onthewebsitesoftheDepartmentofHealth(DH)

England,theWelshAssembly,andtheOfficeofthePublicGuardian.Adviceand

supportinworkingwiththeActandCodeinhealthandsocialcaresettingsare

currentlyavailablefromImplementationLeadsinNHStrustsandhealthboards.

ThereisadditionaladviceonappointingandworkingwithIndependentMental

CapacityAdvocates(IMCAs),isavailableonthewebsitesofDHEnglandandthe

WelshAssembly.



www.publicguardian.gov.uk/mca/mca.htm

www.dh.gov.uk/imca or email:[email protected]

http://new.wales.gov.uk/topics/health/publications/health/guidance/

imcaproviders/?lang=en

TheAdults with Incapacity (Scotland) Act CodeofPractice(part5:decisionsabout

medicaltreatmentandresearch)providesguidanceonapplyingtheAct.Doctors

areexpectedtotakethisguidanceintoaccountintheirtreatmentandcareof

adultswholackcapacity.DetailsoftheActandCodeareavailablefromthe

ScottishGovernment.AdditionalguidanceispublishedbytheMentalWelfare

CommissionwhichalsogivesadviceonworkingwiththeActandCode.

www.scotland.gov.uk/Topics/Justice/law/awi

www.mwcscot.org.uk/newpublications/good_practice_guidance.asp

InNorthernIreland,itisimportantthatdoctorsareawareofcurrentproposalsto

introducein2011adraftBillgoverningdecisionmakinginrelationtoadultswho

lackmentalcapacityandthecompulsorytreatmentofmentalhealthconditions.

Human Rights Act 1998

TheHuman Rights Act 1998camefullyintoforceacrosstheUKin2000.TheAct

incorporatesintodomesticlawthebulkoftherightssetoutintheEuropean

Convention on Human Rights (ECHR).TheActrequiresall‘publicauthorities’,which

includestheNHS,toactinaccordancewiththerightsanddutiessetoutintheAct.

DoctorswhoprovideservicesonbehalfoftheNHSarerequiredtoobservetheAct

inreachingdecisionsaboutindividualpatientsandinrelationtootheraspectsof

NHSservicedelivery.



TheECHRrightsthataremostrelevanttodecisionsabouttreatmentandcare

towardstheendofapatient’slifeare:

(a)Article2:Therighttolifeandpositivedutyonpublicauthoritiestoprotectlife.

(b)Article3:Therighttobefreefrominhumananddegradingtreatment.

(c)Article5:Therighttosecurityoftheperson.

(d)Article8:Therighttorespectforprivateandfamilylife.

(e)Article9:Therighttofreedomofthought,conscienceandreligion.

(f) Article14:Therighttobefreefromdiscriminationintheenjoymentofthese

otherrights.

TheECHRrightsareopentoadegreeofinterpretation,andsince2000theAct

hasbeenusedinanumberofcasestochallengeparticularmedicaldecisions.The

caselawtodateconfirmsthattheestablishedethicalprinciplesandobligations

thatunderpingoodmedicalpracticeareconsistentwiththerightsandduties

establishedundertheECHR.1Itisalsoclearthatdoctorsshouldcontinueto

expectgreaterscrutinyoftheirdecisions,bearinginmindthattheActallowsthe

courttoconsiderboththemeritsofaparticulardecisionandthedecision-making

process.Soitisofincreasedimportancethatdecisionsaremadeinawaythatis

transparent,fairandjustifiable,andthatgreaterattentionispaidtorecordingthe

detailofdecisionsandthereasonsforthem.

Case law

Doctorshaveadutyinlawtoprotectthelifeandfurtherthehealthofpatients.

Anumberoflegaljudgmentsonwithholdingandwithdrawingtreatment,mainly

inEnglishcourts,haveshownthatthecourtsdonotconsiderthatprotectinglife

alwaystakesprecedenceoverotherconsiderations.Thecaselawestablishesa



numberofrelevantprinciples.Thesummarybelowisourunderstandingofthekey

points.Itisnotadefinitivestatementofthecaselaw,andwedonotusethesame

terminologyasappearsinthecourtjudgments.Theendnotescontainthecase

references.

n Anactbywhichthedoctor’sprimaryintention2istobringaboutapatient’s

deathwouldbeunlawful.3

n Anadultpatientwhohascapacitymaydecidetorefusetreatmentevenif

refusalmayresultinharmtothemselvesorintheirowndeath.4Thisright

appliesequallytopregnantwomenastootherpatients,andincludestheright

torefusetreatmentwherethetreatmentisintendedtobenefittheunborn

child.5Doctorsareboundtorespectarefusaloftreatmentfromapatientwho

hascapacityand,iftheyhaveanobjectiontotherefusal,theyhavea

dutytofindanotherdoctorwhowillcarryoutthepatient’swishes.6

n Lifeprolongingtreatmentcanlawfullybewithheldorwithdrawnfromapatient

wholackscapacitywhenstartingorcontinuingtreatmentisnotintheirbest

interests.7

n Thereisnoobligationtogivetreatmentthatisfutileorburdensome.8

n Ifanadultpatienthaslostcapacity,arefusaloftreatmenttheymadewhen

theyhadcapacitymustberespected,provideditisclearlyapplicableto

thepresentcircumstancesandthereisnoreasontobelievethatthepatient

hadhadachangeofmind.9

n Inthecaseofchildrenoradultswholackcapacitytodecide,whenreaching

aviewonwhetheraparticulartreatmentwouldbemoreburdensomethan

beneficial,assessmentsofthelikelyqualityoflifeforthepatientwithor

withoutthattreatmentmaybeoneoftheappropriateconsiderations.10



n The‘intolerability’oftreatmentisnotthesoletestofwhethertreatmentisin

apatient’sbestinterests.Theterm‘bestinterests’encompassesmedical,

emotionalandallotherfactorsrelevanttothepatient’swelfare.11

n Apatient’sbestinterestsmaybeinterpretedasmeaningthatapatientshould

notbesubjectedtomoretreatmentthanisnecessarytoallowthemtodie

peacefullyandwithdignity.12

n Allreasonablestepsshouldbetakentoovercomechallengeswhen

communicatingwith,ormanagingthecareofpatientswithdisabilities,to

ensurethattheyareprovidedwiththetreatmenttheyneedandthatwould

beinthebestinterestsofthepatient.13

n Ifcliniciansandachild’sfamilyareinfundamentaldisagreementoverthe

child’streatment,theviewsofthecourtshouldbesought.14

n Ifapatientasksforatreatmentthattheirdoctorhasnotoffered,andthe

doctorconcludesthatthetreatmentwillnotbeclinicallyappropriateto

thepatient,thedoctorisnotobligedtoprovideit,buttheyshouldofferto

arrangeforasecondopinion.15

n Ifclinicallyassistednutritionorhydrationisnecessarytokeepapatient

alive,thedutyofcarewillnormallyrequirethedoctortoprovideit,ifa

patientwithcapacitywishestoreceiveit.16

n Clinicallyassistednutritionorhydrationmaybewithheldorwithdrawnifthe

patientdoesnotwishtoreceiveit;orifthepatientisdyingandthecare

goalschangetopalliativecareandreliefofsuffering;orifthepatientlacks

capacitytodecideanditisconsideredthatprovidingclinicallyassisted

nutritionorhydrationwouldnotbeintheirbestinterests.17

n Inthecaseofpatientsinapermanentvegetativestate(PVS),clinicallyassisted

nutritionorhydrationconstitutesmedicaltreatmentandmaybelawfully

withdrawnincertaincircumstances.18However,inpractice,acourtdeclaration

shouldbeobtained.19



n Responsibilityrestswiththedoctortodecidewhichtreatmentsareclinically

indicatedandshouldbeofferedtothepatient.Thedecisiontoprovide

treatmentshouldbesubjecttothepatient’sconsentiftheyhavecapacityor,

iftheylackcapacity,anyknownviewsofthepatientpriortolosingcapacity

andanyviewsofferedbythoseclosetothem.20

n Whenthecourtisaskedtoreachaviewaboutwithholdingorwithdrawinga

treatment,itwillhaveregardtowhetherwhatisproposedisinaccordance

witharesponsiblebodyofmedicalopinion.Butthecourtwilldeterminefor

itselfwhethertreatmentornon-treatmentisinthepatient’sbestinterests.21

Inthisarea,althoughcaselawinScotlandandNorthernIrelandhasnotbeen

muchdeveloped,generallythecourtsinScotlandcanbeexpectedtofollowthe

Englishdecisions.InNorthernIreland,decisionsoftheHouseofLordsarebinding

onthecourts;decisionsoftheCourtofAppealinEnglandareregardedashighly

persuasive;anddecisionsoftheHighCourtinEnglandarereadwithinterestand

oftenfollowed.



1 ANationalHealthTrustvD(2000)55BMLR19;NHSTrustAvMandNHS

TrustBvH(2000)58BMLR87.

2 RvCox(1992)12BMLR38.

3 ForaveryrareexceptioninthecaseofconjoinedtwinsseeRe:A(Children)

(Conjoinedtwins:surgicalseparation)[2000]4AllER961.

4 AiredaleNHSTrustvBland[1993]1AllER821atpage860perLordKeith

andpage866perLordGoff.AlsoReJT(Adult:RefusalofMedicalTreatment)

[1998]1FLR48andReAK(MedicalTreatment:Consent)[2001]1FLR129.

5 StGeorge’sHealthcareTrustvS(No2).RvLouiseCollins&Others,ExParte

S(No2)[1993]3WLR936.

6 ReMsBvaNHSHospitalTrust[2002]EWHC429(Fam).

7 AiredaleNHSTrustvBland[1993]1AllER821.

8 ReJ(AMinor)(Wardship:MedicalTreatment)[1990]3AllER930.

9 AiredaleNHSTrustvBland[1993]1AllER821atpage860perLordKeithand

page866perLordGoff.ReT(Adult:RefusalofTreatment)[1992]4AllER349

andReAK(MedicalTreatment:Consent)[2001]1FLR129.WHealthcareNHS

TrustvH[2005]1WLR834.

10 ReB[1981]1WLR421;ReC(AMinor)[1989]2AllER782;ReJ(AMinor)

(Wardship:MedicalTreatment)[1990]3AllER930;ReR(Adult:Medical

Treatment)[1996]2FLR99.

11 Wyatt&AnorvPortsmouthHospitalNHS&Anor[2005]EWCACiv1181.

BurkevGMC[2005]EWCACiv1003.AnNHSTrustvMB[2006]EWHC507

(Fam).

12 AnNHSTrustvMsD[2005]EWHC2439(Fam).BurkevGMC[2005]EWCA

Civ1003.

13 AnNHSTrustvS&Ors[2003]EWHC365(Fam).

14 GlassvtheUnitedKingdom(ECHR,2004).

Endnotes for Legal Annex



15 ReJ(AMinor)(ChildinCare:MedicalTreatment)[1992]2allER614;Burkev

GMC[2005]EWCACiv1003.

16 BurkevGMC[2005]EWCACiv1003.

17 BurkevGMC[2005]EWCACiv1003.NHSTrustvMsD[2005]EWHC2439

(Fam).

18 AiredaleNHSTrustvBland[1993]1AllER821;LawHospitalNHSTrustvLord

Advocate1996SLT848.

19 AiredaleNHSTrustvBland[1993]1AllER821;LawHospitalNHSTrustv

LordAdvocate1996SLT848.AlsorefertoPracticeNote(OfficialSolicitor:

DeclaratoryProceedings:MedicalandWelfareDecisionsforAdultsWhoLack

Capacity)[2001]2FLR.

20 ReJ(AMinor)(ChildinCare:MedicalTreatment)[1992]2AllER614;andRe

G(PersistentVegetativeState)[1995]2FCR46.

21 ReA(MaleSterilisation)[2000]FCR193;andReS(Adult:Sterilisation)[2000]

2FLR389.HealthAndSocialServicesTrustvPM&Anor[2007]NIFam13(21

December2007).



Glossary of terms

Advance care planning: Theprocessofdiscussingthetypeoftreatmentand

carethatapatientwouldorwouldnotwishtoreceiveintheeventthatthey

losecapacitytodecideorareunabletoexpressapreference,forexampletheir

preferredplaceofcareandwhotheywouldwanttobeinvolvedinmaking

decisionsontheirbehalf.Itseekstocreatearecordofapatient’swishesand

values,preferencesanddecisions,toensurethatcareisplannedanddeliveredina

waythatmeetstheirneedsandinvolvesandmeetstheneedsofthoseclosetothe

patient.

Advance decision or advance directive: Astatementofapatient’swishtorefuse

aparticulartypeofmedicaltreatmentorcareiftheybecomeunabletomake

orcommunicatedecisionsforthemselves.Theyarecalledadvancedecisionsin

EnglandandWales,andadvancedirectivesinScotland.Ifanadvancerefusalis

validandapplicabletotheperson’scurrentcircumstances,itmustberespected.It

willbelegallybindingonthoseprovidingcareinEnglandandWales(providedthat

ifitrelatestolife-prolongingtreatmentitsatisfiestheadditionallegalcriteria),and

itislikelytobelegallybindinginScotlandandNorthernIreland.

Advance statement:Astatementofapatient’sviewsabouthowtheywouldor

wouldnotwishtobetreatediftheybecomeunabletomakeorcommunicate

decisionsforthemselves.Thiscanbeageneralstatementabout,forexample,

wishesregardingplaceofresidence,religiousandculturalbeliefs,andother

personalvaluesandpreferences,aswellasaboutmedicaltreatmentandcare.

Artificial nutrition and hydration (ANH):Seeclinicallyassistednutritionand

hydration.



Capacity:Theabilitytomakeadecision.Anadultisdeemedtohavecapacity

unless,havingbeengivenallappropriatehelpandsupport,itisclearthatthey

cannotunderstand,retain,useorweighuptheinformationneededtomakea

particulardecisionortocommunicatetheirwishes.

Clinically assisted nutrition and hydration (CANH): Clinicallyassistednutrition

includesnasogastricfeeding andpercutaneousendoscopicgastrostomy(PEG)or

radiologicallyinsertedgastrostomy(RIG)feedingtubesthroughtheabdominal

wall.PEG,RIGandnasogastrictubefeedingalsoprovidefluidsnecessaryto

keeppatientshydrated.Clinicallyassistedhydrationincludesintravenousor

subcutaneousinfusionoffluids(useofa‘drip’),andnasogastrictubefeedingor

administrationoffluid.Theterm‘clinicallyassistednutritionandhydration’does

notrefertohelpgiventopatientstoeatordrink,forexamplespoonfeeding.

Clinician: Ahealthprofessional,suchasadoctorornurse,involvedinclinical

practice.

DNACPR: Abbreviationof‘DoNotAttemptCardiopulmonaryResuscitation’.These

advancemanagementplansmaybecalledDNARordersorAllowNaturalDeath

decisionsinsomehealthcaresettings.

End of life: Patientsare‘approachingtheendoflife’whentheyarelikelytodie

withinthenext12months.Thisincludesthosepatientswhosedeathisexpected

withinhoursordays;thosewhohaveadvanced,progressiveincurableconditions;

thosewithgeneralfrailtyandco-existingconditionsthatmeantheyareexpected

todiewithin12months;thoseatriskofdyingfromasuddenacutecrisisinan

existingcondition;andthosewithlife-threateningacuteconditionscausedby

suddencatastrophicevents.Theterm‘approachingtheendoflife’canalsoapply



toextremelyprematureneonateswhoseprospectsforsurvivalareknowntobe

verypoor,andpatientswhoarediagnosedasbeinginapersistentvegetative

state(PVS)forwhomadecisiontowithdrawtreatmentandcaremayleadtotheir

death.

End stage: Thefinalperiodorphaseinthecourseofaprogressivediseaseleading

toapatient’sdeath.

Legal proxy:Apersonwithlegalauthoritytomakecertaindecisionsonbehalfof

anotheradult.Legalproxieswhocanmakehealthcaredecisionsinclude:aperson

holdingaLastingPowerofAttorney(EnglandandWales)oraWelfarePowerof

Attorney(Scotland);acourtappointeddeputy(EnglandandWales);andacourt

appointedguardianorcourtappointedintervener(Scotland).NorthernIreland

currentlyhasnoprovisionforappointinglegalproxieswiththepowertomake

healthcaredecisions.

Neonates:Newborninfants(lessthanonemonthold).

Overall benefit: Inthisguidancetheterm‘overallbenefit’describestheethical

basisonwhichdecisionsaremadeabouttreatmentandcareforadultpatients

wholackcapacitytodecide.Itinvolvesanassessmentoftheappropriateness

oftreatmentandcareoptionsthatencompassesnotonlythepotentialclinical

benefits,burdensandrisksofthoseoptions,butalsonon-clinicalfactorssuchas

thepatient’spersonalcircumstances,wishes,beliefsandvalues.GMCguidance

onoverallbenefit,appliedwiththedecision-makingprinciplesinparagraphs7-13,

isconsistentwiththelegalrequirementtoconsiderwhethertreatment‘benefits’

apatient(Scotland),orisinthepatient’s‘bestinterests’(England,Walesand

NorthernIreland),andtoapplytheotherprinciplessetoutintheMental Capacity

Act 2005andtheAdults with Incapacity (Scotland) Act 2000.



Palliative care: Theholisticcareofpatientswithadvanced,progressive,incurable

illness,focusedonthemanagementofapatient’spainandotherdistressing

symptomsandtheprovisionofpsychological,socialandspiritualsupportto

patientsandtheirfamily.Palliativecareisnotdependentondiagnosisorprognosis,

andcanbeprovidedatanystageofapatient’sillness,notonlyinthelastfewdays

oflife.Theobjectiveistosupportpatientstoliveaswellaspossibleuntiltheydie

andtodiewithdignity.

Persistent vegetative state (PVS):Alsotermeda‘permanentvegetativestate’.

Anirreversibleconditionresultingfrombraindamage,characterisedbylackof

consciousness,thought,andfeeling,althoughsomereflexactivities,suchas

breathing,continue.

Second opinion: Anindependentopinionfromaseniorclinician(whomightbe

fromanotherdiscipline)whohasexperienceofthepatient’sconditionbutwhois

notdirectlyinvolvedinthepatient’scare.Asecondopinionshouldbebasedonan

examinationofthepatientbytheclinician.

Those close to the patient: Anyonenominatedbythepatient,closerelatives

(including parentsifthepatientisachild),partners,closefriends,paidorunpaid

carersoutsidethehealthcareteam,andindependentadvocates.Itmayinclude

attorneysforpropertyandfinancialaffairsandotherlegalproxies,insome

circumstances.

London

Regent’s Place, 350 Euston Road, London NW1 3JN

Manchester

3 Hardman Street, Manchester M3 3AW

Scotland

5th Floor, The Tun, 4 Jackson’s Entry, Holyrood Road, Edinburgh EH8 8PJ

Wales

Regus House, Falcon Drive, Cardiff Bay CF10 4RU

Northern Ireland

9th Floor, Bedford House, 16-22 Bedford Street, Belfast BT2 7FD

Telephone: 0161 923 6602

Email: [email protected]

Website: www.gmc-uk.org

Outside the UK telephone: +44(0)161 923 6602

The GMC is a charity registered in England and Wales (1089278) and Scotland (SC037750)

© 2010 General Medical Council

All rights reserved. No part of this publication may be reproduced, stored in a retrieval

system, or transmitted, in any form or by any means, electronic, mechanical, photocopying,

recording or otherwise without the prior permission of the copyright owner.

ISBN: 978-0-901458-46-9

A catalogue record of this book is available from the British Library

Code: GMC/EOL/0510

Documents

Treatment and care towards the end of life · Patients must be able to trust doctors with their lives and health. To justify that trust you must show respect for human life and you