end of life: planning and care terence grewe, d.o. corporate medical director trinity hospice, llc
TRANSCRIPT
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End of Life: End of Life: Planning and CarePlanning and Care
Terence Grewe, D.O.Terence Grewe, D.O.
Corporate Medical DirectorCorporate Medical Director
Trinity Hospice, LLCTrinity Hospice, LLC
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Ethics in Long Term CareEthics in Long Term Care
Ethical PrinciplesEthical Principles Advanced PlanningAdvanced Planning Withholding/ Withdrawing Therapy Withholding/ Withdrawing Therapy Medical FutilityMedical Futility Physician Assisted SuicidePhysician Assisted Suicide Hospice and Palliative MedicineHospice and Palliative Medicine
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Ethical PrincipalsEthical Principals
Beneficence: physicians are obligated act Beneficence: physicians are obligated act always in the patient’s best interestalways in the patient’s best interest
Nonmaleficence: physicians are obligated Nonmaleficence: physicians are obligated to do no harmto do no harm
Autonomy: patients have a right to make Autonomy: patients have a right to make their own decisionstheir own decisions
Justice: physicians should treat patients Justice: physicians should treat patients with similar conditions equallywith similar conditions equally
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Decision-Making CapacityDecision-Making Capacity
Patient’s ability to understand Patient’s ability to understand informationinformation
To make decisions based on the To make decisions based on the informationinformation
To communicate a choiceTo communicate a choice
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Decision-Making CapacityDecision-Making Capacity
May be temporarily compromised by:May be temporarily compromised by: DrugsDrugs Psychological disturbancesPsychological disturbances Medical conditionsMedical conditions Advancing diseaseAdvancing disease
Is not always the same as competenceIs not always the same as competence
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Determining Decision-Making Determining Decision-Making CapacityCapacity
Frequent observations by physicians, Frequent observations by physicians, family, surrogates, and other health care family, surrogates, and other health care professionalsprofessionals
Asking the patient to paraphrase topics Asking the patient to paraphrase topics under discussionunder discussion
Psychiatric consultationsPsychiatric consultations Mental status tests (MMSE, etc.)Mental status tests (MMSE, etc.)
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Decision Making CapacityDecision Making Capacity
Patients should be considered to have Patients should be considered to have decision-making capacity when in doubtdecision-making capacity when in doubt
When a patient lacks capacity, previously When a patient lacks capacity, previously expressed wishes should be honoredexpressed wishes should be honored
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Decision Making CapacityDecision Making Capacity
Surrogate decision makers should attempt Surrogate decision makers should attempt to make decisions based on what the to make decisions based on what the patient would want as well as their best patient would want as well as their best interestinterest
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Advanced PlanningAdvanced Planning
Advanced Care PlanningAdvanced Care Planning Advanced DirectivesAdvanced Directives Power of Attorney for Health CarePower of Attorney for Health Care SurrogatesSurrogates
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What is advance care planning? What is advance care planning? . . .. . .
Process of planning for future medical Process of planning for future medical carecare
Values and goals are explored, Values and goals are explored, documenteddocumented
Determine proxy decision makerDetermine proxy decision maker Professional, legal responsibilityProfessional, legal responsibility
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. . . What is advance care . . . What is advance care planning?planning?
Trust buildingTrust building Uncertainty reducedUncertainty reduced Helps to avoid confusion and conflictHelps to avoid confusion and conflict Permits peace of mindPermits peace of mind
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5 steps for successful advance 5 steps for successful advance care planningcare planning
1.1. Introduce the topic Introduce the topic
2.2. Engage in structured discussions Engage in structured discussions
3.3. Document patient preferences Document patient preferences
4.4. Review, update Review, update
5. 5. Apply directives when need arisesApply directives when need arises
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Step 1: IntroduceStep 1: Introducethe topicthe topic
Be straightforward and routineBe straightforward and routine Determine patient familiarityDetermine patient familiarity Explain the processExplain the process Determine comfort levelDetermine comfort level Determine proxyDetermine proxy
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Step 2: Engage is structured Step 2: Engage is structured discussionsdiscussions
Proxy decision maker(s) presentProxy decision maker(s) present Describe scenarios, options for careDescribe scenarios, options for care Elicit patient’s values, goalsElicit patient’s values, goals Use a worksheetUse a worksheet Check for inconsistenciesCheck for inconsistencies
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Role of the proxyRole of the proxy
Entrusted to speak for the patientEntrusted to speak for the patient Involved in the discussionsInvolved in the discussions Must be willing, able to take the proxy roleMust be willing, able to take the proxy role
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Patient and proxy educationPatient and proxy education
Define key medical termsDefine key medical terms Explain benefits, burdens of treatmentsExplain benefits, burdens of treatments
Life support may only be short-termLife support may only be short-term Any intervention can be refusedAny intervention can be refused Recovery cannot always be predictedRecovery cannot always be predicted
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Elicit the patient’s values and Elicit the patient’s values and goalsgoals
Ask about past experiencesAsk about past experiences Describe possible situationsDescribe possible situations Write a letterWrite a letter
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Use a validated advisory Use a validated advisory documentdocument
A number are availableA number are available Easy to useEasy to use Reduces chance for omissionsReduces chance for omissions Patients, proxy, family can take homePatients, proxy, family can take home
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Step 3: Document patient Step 3: Document patient preferencespreferences
Review advance directiveReview advance directive Sign the documentationSign the documentation Enter into the medical recordEnter into the medical record Recommend statutory documentsRecommend statutory documents Ensure portabilityEnsure portability
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Step 4: Review, updateStep 4: Review, update
Follow up periodicallyFollow up periodically Note major life eventsNote major life events Discuss, document changesDiscuss, document changes
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Step 5: Apply directivesStep 5: Apply directives
Determine applicabilityDetermine applicability Read and interpret the advance directiveRead and interpret the advance directive Consult with the proxyConsult with the proxy Ethics committee for disagreementsEthics committee for disagreements Carry out the treatment planCarry out the treatment plan
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Common pitfallsCommon pitfalls
Failure to planFailure to plan Proxy absent for discussionsProxy absent for discussions Unclear patient preferencesUnclear patient preferences Focus too narrowFocus too narrow Communicative patients are ignoredCommunicative patients are ignored Making assumptionsMaking assumptions
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Preparation for the Preparation for the last hours of life . . . last hours of life . . .
Advance planningAdvance planning personal choicespersonal choices caregiverscaregivers settingsetting
Loss, grief, coping strategiesLoss, grief, coping strategies
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. . . Preparation for last hours of . . . Preparation for last hours of lifelife
Educating / training patients, families and Educating / training patients, families and caregiverscaregivers
communicationcommunication tasks of caringtasks of caring what to expectwhat to expect
physiologic changes, eventsphysiologic changes, events symptom managementsymptom management
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Advance practical planning . . .Advance practical planning . . .
Financial, legal affairsFinancial, legal affairs Final giftsFinal gifts
bequestsbequests organ donationorgan donation
AutopsyAutopsy
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. . . Advance practical planning. . . Advance practical planning
Burial / cremationBurial / cremation Funeral / memorial servicesFuneral / memorial services GuardianshipGuardianship
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Choice of caregiversChoice of caregivers
Be family first, caregivers only if Be family first, caregivers only if comfortablecomfortable
everyone comfortable in the roleeveryone comfortable in the role seek permissionseek permission change roles if stressedchange roles if stressed
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Choice of setting . . .Choice of setting . . .
Burdens, benefits weighedBurdens, benefits weighed Permit family presencePermit family presence
privacyprivacy intimacyintimacy
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. . .Choice of setting . . .Choice of setting
Minimize family burdenMinimize family burden risk to career, personal economics, healthrisk to career, personal economics, health ghostsghosts
Alternate setting as backupAlternate setting as backup
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Advanced DirectivesAdvanced Directives
Allow patients to make decisions on health Allow patients to make decisions on health care issues while the still have capacitycare issues while the still have capacity
Become effective when the patient loses Become effective when the patient loses decision making capacitydecision making capacity
Living will: documents that state the Living will: documents that state the patients desirespatients desires
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Durable Power of Attorney for Durable Power of Attorney for Health CareHealth Care
Designates a person to act as an agent or Designates a person to act as an agent or proxy to make decisions on behalf of the proxy to make decisions on behalf of the patientpatient
In absence usually spouse, then adult In absence usually spouse, then adult children, parents, and siblingschildren, parents, and siblings
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Withholding or Withdrawing Withholding or Withdrawing TherapyTherapy
Principles for withholding or withdrawing Principles for withholding or withdrawing therapytherapy
Withholding or withdrawal ofWithholding or withdrawal of artificial feeding, hydrationartificial feeding, hydration ventilationventilation cardiopulmonary resuscitationcardiopulmonary resuscitation
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Role of the physician . . .Role of the physician . . .
The physician helps the patient and The physician helps the patient and family family
elucidate their own valueselucidate their own values decide about life-sustaining treatmentsdecide about life-sustaining treatments dispel misconceptionsdispel misconceptions
Understand goals of careUnderstand goals of care Facilitate decisions, reassess regularlyFacilitate decisions, reassess regularly
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. . . Role of the physician. . . Role of the physician
Discuss alternativesDiscuss alternatives including palliative and hospice careincluding palliative and hospice care
Document preferences, medical ordersDocument preferences, medical orders Involve, inform other team membersInvolve, inform other team members Assure comfort, nonabandonmentAssure comfort, nonabandonment
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Common concerns . . .Common concerns . . .
Legally required to “do everything?”Legally required to “do everything?” Is withdrawal, withholding euthanasia?Is withdrawal, withholding euthanasia? Are you killing the patient when you Are you killing the patient when you
remove a ventilator or treat pain?remove a ventilator or treat pain?
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. . . Common concerns. . . Common concerns
Can the treatment of symptoms constitute Can the treatment of symptoms constitute euthanasia?euthanasia?
Is the use of substantial doses of opioids Is the use of substantial doses of opioids euthanasia?euthanasia?
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Life-sustaining treatmentsLife-sustaining treatments
ResuscitationResuscitation Elective intubationElective intubation SurgerySurgery DialysisDialysis Blood transfusions, Blood transfusions,
blood productsblood products
Diagnostic testsDiagnostic tests Artificial nutrition, Artificial nutrition,
hydrationhydration AntibioticsAntibiotics Other treatmentsOther treatments Future hospital, ICU Future hospital, ICU
admissionsadmissions
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8-step protocol to discuss 8-step protocol to discuss treatment preferences . . .treatment preferences . . .
1.1. Be familiar with policies, statutes Be familiar with policies, statutes
2.2. Appropriate setting for the discussion Appropriate setting for the discussion
3.3. Ask the patient, family what they Ask the patient, family what they understandunderstand
4.4. Discuss general goals of care Discuss general goals of care
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. . . 8-step protocol to discuss . . . 8-step protocol to discuss treatment preferencestreatment preferences
5.5. Establish context for the discussion Establish context for the discussion
6.6. Discuss specific treatment preferences Discuss specific treatment preferences
7.7. Respond to emotions Respond to emotions
8.8. Establish and implement the plan Establish and implement the plan
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Aspects of informed consentAspects of informed consent
Problem treatment would addressProblem treatment would address What is involved in the treatment / What is involved in the treatment /
procedureprocedure What is likely to happen if the patient What is likely to happen if the patient
decides not to have the treatmentdecides not to have the treatment Treatment benefitsTreatment benefits Treatment burdensTreatment burdens
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Example 1: Artifical feeding, Example 1: Artifical feeding, hydrationhydration
Difficult to discussDifficult to discuss Food, water are symbols of caring Food, water are symbols of caring PEG tubes and artificial hydration may PEG tubes and artificial hydration may
actually induce sufferingactually induce suffering
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Review goals of careReview goals of care
Establish overall goals of careEstablish overall goals of care Will artificial feeding, hydration help Will artificial feeding, hydration help
achieve these goals?achieve these goals?
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Address misperceptionsAddress misperceptions
Cause of poor appetite, fatigueCause of poor appetite, fatigue Relief of dry mouthRelief of dry mouth DeliriumDelirium Urine outputUrine output
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Help family with need to give Help family with need to give carecare
Identify feelings, emotional needsIdentify feelings, emotional needs Identify other ways to demonstrate caringIdentify other ways to demonstrate caring
teach the skills they needteach the skills they need
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Normal dyingNormal dying
Loss of appetiteLoss of appetite Decreased oral fluid intakeDecreased oral fluid intake Artificial food / fluids may make situation Artificial food / fluids may make situation
worseworse breathlessnessbreathlessness
edemaedema
ascitesascites
nausea / vomitingnausea / vomiting
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Example 2: Ventilator Example 2: Ventilator withdrawalwithdrawal
Rare, challengingRare, challenging Ask for assistanceAsk for assistance Assess appropriateness of requestAssess appropriateness of request Role in achieving overall goals of careRole in achieving overall goals of care
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Immediate extubationImmediate extubation
Remove the endotracheal tube after Remove the endotracheal tube after appropriate suctioningappropriate suctioning
Give humidified air or oxygen to prevent Give humidified air or oxygen to prevent the airway from dryingthe airway from drying
Ethically sound practiceEthically sound practice
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Terminal weaningTerminal weaning
Rate, PEEP, oxygen levels are decreased Rate, PEEP, oxygen levels are decreased firstfirst
Over 30–60 minutes or longerOver 30–60 minutes or longer A Briggs T piece may be used in place of A Briggs T piece may be used in place of
the ventilatorthe ventilator Patients may then be extubatedPatients may then be extubated
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Ensure patient comfortEnsure patient comfort
Anticipate and prevent discomfortAnticipate and prevent discomfort Have anxiolytics, opioids immediately Have anxiolytics, opioids immediately
availableavailable Titrate rapidly to comfortTitrate rapidly to comfort Be present to assess, reevaluateBe present to assess, reevaluate
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Prevent symptomsPrevent symptoms
BreathlessnessBreathlessness opioidsopioids
AnxietyAnxiety benzodiazepinesbenzodiazepines
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Prepare the family . . .Prepare the family . . .
Describe the procedureDescribe the procedure Reassure that comfort is a primary Reassure that comfort is a primary
concernconcern Medication is availableMedication is available Patient may need to sleep to be Patient may need to sleep to be
comfortablecomfortable
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Example 3: Cardiopulmonary Example 3: Cardiopulmonary resuscitationresuscitation
Establish general goals of careEstablish general goals of care Use understandable languageUse understandable language Avoid implying the impossibleAvoid implying the impossible Ask about other life-prolonging therapiesAsk about other life-prolonging therapies Affirm what you will be doingAffirm what you will be doing
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Write appropriate medical Write appropriate medical ordersorders
DNRDNR DNIDNI Do not transferDo not transfer OthersOthers
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Medical FutilityMedical Futility
Patients / families may be invested in Patients / families may be invested in interventionsinterventions
Physicians / other professionals may be Physicians / other professionals may be invested in interventionsinvested in interventions
Any party may perceive futilityAny party may perceive futility
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Definitions of Definitions of medical futilitymedical futility
Won’t achieve the patient’s goalWon’t achieve the patient’s goal Serves no legitimate goal of medical Serves no legitimate goal of medical
practicepractice Ineffective more than 99% of the timeIneffective more than 99% of the time Does not conform to accepted community Does not conform to accepted community
standardsstandards
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Is this really a futility case?Is this really a futility case?
Unequivocal cases of medical futility are Unequivocal cases of medical futility are rarerare
Miscommunication, value differences are Miscommunication, value differences are more commonmore common
Case resolution more important than Case resolution more important than definitionsdefinitions
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Conflict over treatmentConflict over treatment
Unresolved conflicts lead to miseryUnresolved conflicts lead to misery most can be resolvedmost can be resolved
Try to resolve differencesTry to resolve differences Support the patient / familySupport the patient / family Base decisions onBase decisions on
informed consent, advance care planning, informed consent, advance care planning, goals of caregoals of care
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Differential diagnosis of futility Differential diagnosis of futility situationssituations
Inappropriate surrogateInappropriate surrogate MisunderstandingMisunderstanding Personal factorsPersonal factors Values conflictValues conflict
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Surrogate selectionSurrogate selection
Patient’s stated preferencePatient’s stated preference Legislated hierarchyLegislated hierarchy Who is most likely to know what the patient Who is most likely to know what the patient
would have wanted?would have wanted? Who is able to reflect the patient’s best Who is able to reflect the patient’s best
interest?interest? Does the surrogate have the cognitive ability Does the surrogate have the cognitive ability
to make decisions?to make decisions?
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Misunderstanding of diagnosis / Misunderstanding of diagnosis / prognosisprognosis
Underlying causesUnderlying causes How to assessHow to assess How to respondHow to respond
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Misunderstanding: underlying Misunderstanding: underlying causes . . .causes . . .
Doesn’t know the diagnosisDoesn’t know the diagnosis Too much jargonToo much jargon Different or conflicting information Different or conflicting information Previous overoptimistic prognosisPrevious overoptimistic prognosis Stressful environmentStressful environment
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. . . Misunderstanding: . . . Misunderstanding: underlying causesunderlying causes
Sleep deprivationSleep deprivation Emotional distress Emotional distress Psychologically unprepared Psychologically unprepared Inadequate cognitive abilityInadequate cognitive ability
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Misunderstanding: Misunderstanding: how to respond . . .how to respond . . .
Choose a primary communicator Choose a primary communicator Give information inGive information in
small piecessmall pieces multiple formatsmultiple formats
Use understandable language Use understandable language Frequent repetition may be requiredFrequent repetition may be required
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. . . Misunderstanding: how to . . . Misunderstanding: how to respondrespond
Assess understanding frequentlyAssess understanding frequently Do not hedge to “provide hope”Do not hedge to “provide hope” Encourage writing down questionsEncourage writing down questions Provide supportProvide support Involve other health care professionalsInvolve other health care professionals
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Personal factorsPersonal factors
DistrustDistrust GuiltGuilt GriefGrief Intrafamily issuesIntrafamily issues Secondary gainSecondary gain Physician / nursePhysician / nurse
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Types of futility conflicts Types of futility conflicts
Disagreement overDisagreement over goalsgoals benefitbenefit
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Difference in valuesDifference in values
ReligiousReligious MiraclesMiracles Value of lifeValue of life
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A due process A due process approach to futility . . .approach to futility . . .
Earnest attempts in advanceEarnest attempts in advance Joint decision makingJoint decision making Negotiation of disagreementsNegotiation of disagreements Involvement of an institutional committeeInvolvement of an institutional committee
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. . . A due process approach to . . . A due process approach to futilityfutility
Transfer of care to another physicianTransfer of care to another physician Transfer to another institutionTransfer to another institution
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Euthanasia and Physician-Euthanasia and Physician-Assisted SuicideAssisted Suicide
Proponents stress patient autonomy and Proponents stress patient autonomy and mercymercy
Opponents claim harm to patientsOpponents claim harm to patients Patient’s request for PAS should signal a Patient’s request for PAS should signal a
problem with the patient’s careproblem with the patient’s care Expert palliative care can eliminate the Expert palliative care can eliminate the
desire for PASdesire for PAS
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The legal and The legal and ethical debate . . .ethical debate . . .
PrinciplesPrinciples obligation to relieve pain and sufferingobligation to relieve pain and suffering respect decisions to forgo life-sustaining respect decisions to forgo life-sustaining
treatmenttreatment
The ethical debate is ancientThe ethical debate is ancient US Supreme Court recognizedUS Supreme Court recognized
NO right to PASNO right to PAS
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. . . The legal and . . . The legal and ethical debateethical debate
The legal status of PAS can differ from The legal status of PAS can differ from state to statestate to state
Oregon is the only state where PAS is Oregon is the only state where PAS is legal (as of 1999)legal (as of 1999)
Supreme Court Justices supportedSupreme Court Justices supported right to palliative careright to palliative care
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6-step protocol to respond to 6-step protocol to respond to requests . . .requests . . .
1.1. Clarify the request Clarify the request
2.2. Assess the underlying causes of the Assess the underlying causes of the requestrequest
3.3. Affirm your commitment to care for the Affirm your commitment to care for the patientpatient
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. . . 6-step protocol to respond . . . 6-step protocol to respond to requeststo requests
4.4. Address the root causes of the request Address the root causes of the request
5.5. Educate the patient and discuss legal Educate the patient and discuss legal alternativesalternatives
6.6. Consult with colleagues Consult with colleagues
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Hospice and Palliative MedicineHospice and Palliative Medicine
When cure is not possible, treatment goals When cure is not possible, treatment goals changechange
From prolonging life to controlling From prolonging life to controlling symptomssymptoms
Emphasis on advanced planning and Emphasis on advanced planning and ongoing care rather than crisis interventionongoing care rather than crisis intervention
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Palliative TreatmentsPalliative Treatments
Enhance comfortEnhance comfort Improve quality of lifeImprove quality of life Relieve symptoms and sufferingRelieve symptoms and suffering Includes medicines, therapies and Includes medicines, therapies and
sometimes radiation, surgery, etc. To sometimes radiation, surgery, etc. To improve quality of lifeimprove quality of life
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End of Life IssuesEnd of Life Issues
Recognize life-ending disease processes Recognize life-ending disease processes and address them with patients and and address them with patients and familiesfamilies
Help patients make end-of-life decisions Help patients make end-of-life decisions such as living wills, power of attorney and such as living wills, power of attorney and DNRDNR
Consider Hospice and Palliative care Consider Hospice and Palliative care when cure is not an optionwhen cure is not an option
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End of LifeEnd of Life
Physicians can help patients and Physicians can help patients and their families face the end-of -life, their families face the end-of -life, make reasonable end-of -life make reasonable end-of -life decisions and eliminate suffering decisions and eliminate suffering to allow the patient to live their last to allow the patient to live their last days to the fullestdays to the fullest