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

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

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

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

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

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.)

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

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

Advanced PlanningAdvanced Planning

Advanced Care PlanningAdvanced Care Planning Advanced DirectivesAdvanced Directives Power of Attorney for Health CarePower of Attorney for Health Care SurrogatesSurrogates

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

. . . 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

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

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

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

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

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

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

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

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

Step 4: Review, updateStep 4: Review, update

Follow up periodicallyFollow up periodically Note major life eventsNote major life events Discuss, document changesDiscuss, document changes

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

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

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

. . . 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

Advance practical planning . . .Advance practical planning . . .

Financial, legal affairsFinancial, legal affairs Final giftsFinal gifts

bequestsbequests organ donationorgan donation

AutopsyAutopsy

. . . Advance practical planning. . . Advance practical planning

Burial / cremationBurial / cremation Funeral / memorial servicesFuneral / memorial services GuardianshipGuardianship

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

Choice of setting . . .Choice of setting . . .

Burdens, benefits weighedBurdens, benefits weighed Permit family presencePermit family presence

privacyprivacy intimacyintimacy

. . .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

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

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

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

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

. . . 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

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?

. . . 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?

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

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

. . . 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

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

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

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?

Address misperceptionsAddress misperceptions

Cause of poor appetite, fatigueCause of poor appetite, fatigue Relief of dry mouthRelief of dry mouth DeliriumDelirium Urine outputUrine output

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

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

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

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

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

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

Prevent symptomsPrevent symptoms

BreathlessnessBreathlessness opioidsopioids

AnxietyAnxiety benzodiazepinesbenzodiazepines

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

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

Write appropriate medical Write appropriate medical ordersorders

DNRDNR DNIDNI Do not transferDo not transfer OthersOthers

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

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

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

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

Differential diagnosis of futility Differential diagnosis of futility situationssituations

Inappropriate surrogateInappropriate surrogate MisunderstandingMisunderstanding Personal factorsPersonal factors Values conflictValues conflict

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?

Misunderstanding of diagnosis / Misunderstanding of diagnosis / prognosisprognosis

Underlying causesUnderlying causes How to assessHow to assess How to respondHow to respond

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

. . . Misunderstanding: . . . Misunderstanding: underlying causesunderlying causes

Sleep deprivationSleep deprivation Emotional distress Emotional distress Psychologically unprepared Psychologically unprepared Inadequate cognitive abilityInadequate cognitive ability

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

. . . 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

Personal factorsPersonal factors

DistrustDistrust GuiltGuilt GriefGrief Intrafamily issuesIntrafamily issues Secondary gainSecondary gain Physician / nursePhysician / nurse

Types of futility conflicts Types of futility conflicts

Disagreement overDisagreement over goalsgoals benefitbenefit

Difference in valuesDifference in values

ReligiousReligious MiraclesMiracles Value of lifeValue of life

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

. . . 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

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

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

. . . 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

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

. . . 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

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

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

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

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