who should get admission to inpaent hospice/palliave care ... and resource allocation... ·...
TRANSCRIPT
Bashir Jiwani, PhD
EthicsandResourceAllocation:
HowtoRespectHumanDignityintheMakingof
ToughChoices
Hospice&Pallia-veCareManitoba19thAnnualProvincialConference
1
Bashir Jiwani, PhD
Ethicist & Director
Fraser Health Ethics Services
Whoshouldgetadmissiontoinpa-enthospice/pallia-vecarebeds?
pa%ent age Lengthof%mewai%ng
An%cipatedlengthofstay
Acuityofphysicalpain
Acuityofpsychosocialdistress
Familycopingwell
Currentplace
Nursingcareneeds
James 50 Twoweeks
Ac-vedeteriora-on
high medium no Acutecare
high
Tina 75 3months
Longertermstay
medium high Nofamily
Assistedliving
medium
Akbar 80 1month
Hasapproachedac-vedeteriora-on,thenimprovedsohardtosay
medium low Stretched,butnotincrisis
home high
Bashir Jiwani, PhD
Howdoyourespond–tothesystem?
• Youarealeader.
• Ahomecarenursecallsyou.• Sheisgoingtovisitapa-enttoday,whosefamilyisdoingthebest
theycantosupporttheirfatherwhoisdying.
• Sheknowsthatheandtheywanttostayathome,butmayhaveques-onsorneedsupport.
• HowdotheyaccesssupportaSerthebusinessdayisover?
• Youseethisasabroaderissue.Youareverysensi-vetothecomplexi-esofhealthcaredecision‐makingandthechallengesfacingleadersandprac--onersatalllevels,butfeeltheneedtoadvocateforbeVercareforthispopula-on.
• Howdoyouengagethesystemaboutit?
Whoshouldgetyour-me?
• Youareahomecarenurse.
• YouarriveatworkonMondaymorningandseetherosterofpa-entsawai-ngyoursupport.
• Thereare20pa-entsandfamiliesonthelist.
• Ifyouweretogiveeveryonethe-metheyneeded,itwouldtake80hours.
• Youhaveonly30hourstoallocate.
• Whoshouldgetyour-me?
Bashir Jiwani, PhD
1. Ethics,values&budgets
2. EthicsDimensionsofresource
alloca%on
3. ThreePartsofresourcealloca%on
policy
4. Tools/keysforengaging
ETHICS AS JUDGMENT
God-Squad Ethics Police
Unhelpful understandings
Bashir Jiwani, PhD
ETHICS AS COMPLIANCE
Unhelpful understandings
Ethics as living with integrity
Bashir Jiwani, PhD
Budgetscommunicatevalues
Yourdecisions,ac-onsandaYtudesareallbasedonyourvaluesandbeliefs
Yourbudgetisasummaryofwhatisimportanttoyouandhowyouwillgetthere
Valuesconcern theactualdecisionyoumake(content)
Howyoumakethedecision(process)
9
Respect
Uncondi-onalposi-veregard
Empathe-cunderstanding
Meaningfulengagementofideas
Inafiduciaryrela-onship: guidingdecisionsbasedon
truster’svaluesandbeliefs
Inarela-onshipofin-matepartners: Collabora-on
Inarela-onshipof(whatshouldbe)publicequals: Transparentdecisionsbased
oninformed,inclusive,recursive,reflexivedelibera-on
10!
Bashir Jiwani, PhD
SubstantiveValues:ModelsofDistributiveJustice
Whatisourunderstandingofjus-ce? Trea-ngeveryoneequally?
Trea-ngeveryoneequitably?
Maximizingoverallhappiness?
Buildingcommunitysolidarity?
Respec-ngindividualliberty?
11
Differencesinhealth
Jus-fied(thoughunequal) Overallhealthbetween
youngandold
Prostatecancerratesbetweenmenandwomen
Unjus-fied(unequalandinequitable) Nutri-onalstatus
betweengirlsandboys
Immuniza-onstatusbetweengirlsandboys
Accesstocarebasedonrace
12!
Bashir Jiwani, PhD
InequityinHealth
Inequali-esinhealththatareunjust/unfair
Unjust/unfairifsystema-callyputgroupsofpeoplealreadysociallydisadvantagedatfurtherdisadvantage
Systema-cinequalityinhealthbetweenmoreandlessadvantagedgroupsinsociety
13!
GroupsatriskinCanada
Poor
Homeless
Aboriginalcommuni-es
Immigrant&refugeepopula-on
Peoplewithphysicalandmentaldisabili-es
14!
Bashir Jiwani, PhD
Meritocracyandvulnerablepopulations
Peoplewithdemen-a...“havenoknowledgeleStoconveytotheirchildren,theynolongerareintertwinedwiththecommunitybutratherhavelostthememoryofrela-onships;andtheyarethereforeeasilytransgressedandabandoned.”(Post,1995)
15!
16
Allocation levels: forward and back
MACRO
MESO
MICRO
MEGA ALLOCATION!
Bashir Jiwani, PhD
IsequityaCanadianvalue?
Ifso,thishasimplica-ons Withinindividualcareprograms
Withinthehealthsystem
Withinmacrogovernmentalpolicy
Forouroutlookonforeignaffairs
17!
18
2.Salientethicsdimensionsofdecisions…
Mandateofandrela-onshipsbetweendecision‐makers
Consulta-onofothers Experts
Thoseimpacted
Decisionitself
Decisionfollow‐up
Bashir Jiwani, PhD
Howadecisionismade
Whospeaks?
Howisdifferencedealtwith?
Howaredecisionsmade?
Whatstandardswillbeusedtodecidewhatcountsasevidence?
19
Theprocessofdecision‐making
Implicitra-oning Discre-onofprofessionals
Subjec-ve
Sensi-vetopa-entneeds?
Focusonthequalityofthestory
Moresensi-vetocultureoffacilitythanindividualpa-entneeds?
Explicitra-oning Useofformalcriteria
Transparent
Accountable
Fair?
Bashir Jiwani, PhD
Decision‐makinginademocracy
Theroleandauthorityof… Elites
thoseinposi-onsofpower Butinademocracy
Experts Clinicalexperts Expertsabouttheirownlives
Publics Thecommuni-esthatthedecisionsaremeanttoserve
21
Respectfulsystem‐leveldecision‐making
Uncondi-onalposi-veregard
Empathe-cunderstanding
Meaningfulengagementofideas
Inarela-onshipof(whatshouldbe)publicequals: Transparentdecisions basedondelibera-onthatis
informed, inclusive, recursive, reflexive
22!
Bashir Jiwani, PhD
!23
WhatdecisionismadeCriteriaforadmission
• Age
• Deservingness
• Seniority–howlongwai-ng
• Acuityofpain,symptomseverity,needforsymptomcontrol
• Psychosocialcare/crisis
• Risktophysicalsafety
• Poli-calsignificance
• Pa-entbestinterests
• Probablelongertermstay
• Terminalcare–ac-vedeteriora-on
• Respitecare‐Risktofamilystress
• Con-nuingcare
• Rehab
• Clinician’spersonalknowledgeofpa-ent
• Dependencylevel
• Nursingcareneeds
Howarepeoplesupported?
24
Bashir Jiwani, PhD
3.3partsofaresourceallocationpolicy
Thecriteriaused
Whousesthecriteria
Theprocessbywhichthecriteriaareused
25
26
Geoff, Tony, and Betty Ann agree to go on a holiday
Geoff: family castle in Italy Tony: Montana Betty Ann: Hawaii
Bashir Jiwani, PhD
27
How about these criteria?
Definite option Maybe Not an option
Where does this take us?
28
Ok, how about this criterion… Have a good time…
Bashir Jiwani, PhD
29
OK, it’s important that…
Access to fine wine Email access Access to family Within budget Good business facilities Access to mountain biking Exposure to new culture
30
Prioritized, it’s important that…
Most important Access to fine wine Access to mountain biking Access to family Within budget
Imortant Email access Good business facilities Exposure to new culture
ITALY, it is!
Bashir Jiwani, PhD
31
But wait…
Geoff always gets his way! NOT Italy!
4.Stepsforward
Theskillsofethics
Understandingourownvaluesandbeliefs
Listeningtootherstounderstandtheperspec-vestheyarecomingfrom
Engagingindelibera-onrespecoully
Ar-cula-ngthera-onalebehinddecisions
Ac-ngondecisions,evenwhendifficult
32
Bashir Jiwani, PhD
Forleaders
Makedecisionstransparent
Usesystema-cprocesses
Createacultureofappropriateconsulta-on&engagement
Supportthoseimpacted
33!
Stepsahead–forallofus
Usesystema-cprocessesforanalyzingissues
Useavailableethicsresources
Pushauthoritywhereappropriate
LookaSeryourselves
34!
Bashir Jiwani, PhD
Makingethicsrealatthe
systemlevel
35
36!
Weareguidedbyvalues,whetherwerecognizeitornot
Tothinkaboutandactonthevalueswehavereasontocherish,asopposedtovaluesthathavebeensubtlyinculcatedinusistotakecontrolofourlives‐tobefree
EthicsasFreedom