Advance Care Planning: Important Issues Larry Librach MD,CCFP,FCFP Professor & Head, Division of Palliative Care, Dept. of Family Medicine, Sun Life Financial Chair & Director Joint Centre for Bioethics, University of Toronto

Temmy Latner Centre2 Challenges ACP laws in Trinidad may not be well understoodACP laws in Trinidad may not be well understood Terminology is not consistently used or understoodTerminology is not consistently used or understood e.g., proxy, substitute decision- maker, advanced directive, proxy directive, living will e.g., proxy, substitute decision- maker, advanced directive, proxy directive, living will

Temmy Latner Centre3 ACP - Definition A process whereby a capable (mentally competent) adult engages in a plan for making personal health care decisions in the event that he/she becomes incapable of personally directing his/her own health care

Temmy Latner Centre4 ACP is a processACP is a process It is not defined by a written document onlyIt is not defined by a written document only

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Temmy Latner Centre6 ACP - What is it? Process of planning & making choices for future medical careProcess of planning & making choices for future medical care Values, preferences, wishes & goals are explored & documentedValues, preferences, wishes & goals are explored & documented Determines who is substitute decision maker (SDM)Determines who is substitute decision maker (SDM) Professional & legal responsibilityProfessional & legal responsibility

Temmy Latner Centre7 ACP - What is it? Trust building patient/family & HCPTrust building patient/family & HCP Reducing uncertaintyReducing uncertainty Helps to avoid confusion & conflictHelps to avoid confusion & conflict Permits peace of mindPermits peace of mind

Temmy Latner Centre8 Advance Directive (AD) A legal written document that outlines choices when someone is incompetentA legal written document that outlines choices when someone is incompetent Many different formats dependent on jurisdictionMany different formats dependent on jurisdiction Living Will Living Will Proxy directive (legal term to designate SDM) Proxy directive (legal term to designate SDM) Power of attorney for personal care Power of attorney for personal care

Temmy Latner Centre9 Advance Directive Explains who makes health care decisions when the patient is unable incompetent & gives direction to that personExplains who makes health care decisions when the patient is unable incompetent & gives direction to that person It is not a consentIt is not a consent

Temmy Latner Centre10 AD-Problems with Completion Few patients sign ADs (completion rates of 4-25%)Few patients sign ADs (completion rates of 4-25%) education/promotion does not improve rates education/promotion does not improve rates Documenting wishes of questionable validityDocumenting wishes of questionable validity wishes can change in times of crisis wishes can change in times of crisis poor understanding of medical interventions poor understanding of medical interventions preference for proxies change preference for proxies change

Temmy Latner Centre11 Problems with Implementation InaccessibilityInaccessibility stored away safe or not on person stored away safe or not on person Poor SDM representationPoor SDM representation wishes not discussed wishes not discussed poor insight or unwilling to follow wishes poor insight or unwilling to follow wishes Physician non adherencePhysician non adherence conflicts with personal, hospital or family preference conflicts with personal, hospital or family preference miscommunication/misunderstanding miscommunication/misunderstanding questions re: validity or patient competency questions re: validity or patient competency

Temmy Latner Centre12 Fundamental Flaws-Underlying Assumptions People think about end-of-life carePeople think about end-of-life care difficult concept, emotionally draining difficult concept, emotionally draining leave the decisions to the doc or SDM leave the decisions to the doc or SDM

Temmy Latner Centre13 Fundamental Flaws ADs can control future medical careADs can control future medical care sudden critical illness may need on- the-spot decisions sudden critical illness may need on- the-spot decisions complex unpredictable situations complex unpredictable situations promise more that can deliver promise more that can deliver

Temmy Latner Centre14 Fundamental Flaws ADs can complicate critical careADs can complicate critical care vague language vague language family/proxy disagreements family/proxy disagreements may be too exact & thus impractical may be too exact & thus impractical inability to follow AD leads to family guilt/shame inability to follow AD leads to family guilt/shame

Temmy Latner Centre15 Role of Health Professionals Health care providers can & should be a support & resource to individuals doing advance care planningHealth care providers can & should be a support & resource to individuals doing advance care planning HCPs should know how to assist an individual to complete an advance care planHCPs should know how to assist an individual to complete an advance care plan

Temmy Latner Centre16 Ethical Obligations Legal & professional ethical obligations by your professional organizations and your legal systemLegal & professional ethical obligations by your professional organizations and your legal system Generally obliges professionals to honour a person’s advance care choices wherever possible Generally obliges professionals to honour a person’s advance care choices wherever possible

Temmy Latner Centre17 Role of Health Professionals The CMA Code of Ethics advises:The CMA Code of Ethics advises: Ascertain wherever possible & recognize your patient’s wishes about the initiation, continuation or cessation of life-sustaining treatment Ascertain wherever possible & recognize your patient’s wishes about the initiation, continuation or cessation of life-sustaining treatment Respect the intentions of an incompetent patient as they were expressed (e.g., through a valid advance directive or proxy designation) before the patient became incompetent Respect the intentions of an incompetent patient as they were expressed (e.g., through a valid advance directive or proxy designation) before the patient became incompetent

Temmy Latner Centre18 Role of Health Professionals The Code of Ethics for Registered Nurses (Canadian Nurses Association) states that:The Code of Ethics for Registered Nurses (Canadian Nurses Association) states that: Nurses must respect a person’s advance directives about present & future health care choices that have been given or written by a person prior to loss of decisional capacity. Nurses must respect a person’s advance directives about present & future health care choices that have been given or written by a person prior to loss of decisional capacity. When a person lacks decisional capacity, nurses must obtain consent for nursing care from a substitute decision-maker, subject to the laws in their jurisdiction. When a person lacks decisional capacity, nurses must obtain consent for nursing care from a substitute decision-maker, subject to the laws in their jurisdiction.

Temmy Latner Centre19 Legal Framework It is the health care provider’s responsibility to know what the law says in Trinidad about ACPIt is the health care provider’s responsibility to know what the law says in Trinidad about ACP What form of AD is recognized? What form of AD is recognized? Is there a definition of capacity or competence? What is it? Is there a definition of capacity or competence? What is it? Does the law specify an age below which one cannot make an AD? What is it? Does the law specify an age below which one cannot make an AD? What is it? Does the law enable a person to appoint a substitute decision-maker? Does the law enable a person to appoint a substitute decision-maker? Does it allow you, as a HCP, to take instructions from an advance directive or must you speak with a substitute decision-maker before providing (or not providing) treatment? Does it allow you, as a HCP, to take instructions from an advance directive or must you speak with a substitute decision-maker before providing (or not providing) treatment? If there is no substitute decision-maker appointed, to whom does the health care provider turn? Does the law specify a hierarchy of people who can make treatment decisions for an incapable person? If there is no substitute decision-maker appointed, to whom does the health care provider turn? Does the law specify a hierarchy of people who can make treatment decisions for an incapable person?

Temmy Latner Centre20 Having the Conversation Focuses on the human side of advance care planning – the conversations health care professionals have with the person & his or her family, how to prepare, what to talk about & what to look out forFocuses on the human side of advance care planning – the conversations health care professionals have with the person & his or her family, how to prepare, what to talk about & what to look out for

Temmy Latner Centre21 Initiating the Conversation Conversations about ACP are better conducted before the end of life is nearConversations about ACP are better conducted before the end of life is near Best done when individual has time & peace of mind to think about the goals of care, can talk openly about wishes & concerns with family or close friends & with HCPs who can provide information & supportBest done when individual has time & peace of mind to think about the goals of care, can talk openly about wishes & concerns with family or close friends & with HCPs who can provide information & support

Temmy Latner Centre22 Initiating the Conversation When is the best time to have the ACP conversation with capable patients?When is the best time to have the ACP conversation with capable patients? When is the best time to have a conversation with the family of an incapable patient ?When is the best time to have a conversation with the family of an incapable patient ?

Temmy Latner Centre23 5 Steps for AC Planning 1. Introduce the topic1. Introduce the topic 2. Engage in structured discussions2. Engage in structured discussions 3. Document patient preferences3. Document patient preferences 4. Review, update4. Review, update 5. Apply directives when need arises5. Apply directives when need arises

Temmy Latner Centre24 Step 1: Introduce Topic Be straightforward & routineBe straightforward & routine Determine patient familiarityDetermine patient familiarity Explain the processExplain the process Determine comfort levelDetermine comfort level Determine SDMDetermine SDM

Temmy Latner Centre25 Step 2: Engage in Structured Discussions SDMs presentSDMs present Patient may choose to have a conversation with you before speaking to SDM Patient may choose to have a conversation with you before speaking to SDM 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

Temmy Latner Centre26 Role of SDM Entrusted to speak for the patientEntrusted to speak for the patient Should make decisions based on direction from person & not their own choices Should make decisions based on direction from person & not their own choices Involved in the discussions at some pointInvolved in the discussions at some point Must be willing & able to take roleMust be willing & able to take role

Temmy Latner Centre27 Patient & SDM Education Define key medical termsDefine key medical terms Explain benefits, burdens of treatmentsExplain benefits, burdens of treatments Life support may only be short-term Life support may only be short-term Any intervention can be refused Any intervention can be refused Recovery cannot always be predicted Recovery cannot always be predicted

Temmy Latner Centre28 Step 3: Document Preferences In the health recordIn the health record Note any AD & review with team Note any AD & review with team Sign the documentationSign the documentation Ensure portability across setting & provinces if possibleEnsure portability across setting & provinces if possible

Temmy Latner Centre29 Step 4: Review & Update Follow up periodically especially as condition changesFollow up periodically especially as condition changes Note major life/illness eventsNote major life/illness events Discuss & document changesDiscuss & document changes Enter into the medical recordEnter into the medical record Ensure portabilityEnsure portability

Temmy Latner Centre30 Step 5: Apply the ACP AD only applies if the person is not capableAD only applies if the person is not capable Decisions about care must be discussed with the capable patientDecisions about care must be discussed with the capable patient Consent must be obtained Consent must be obtained

Temmy Latner Centre31 Step 5: Apply the ACP Determine applicabilityDetermine applicability Read & interpret the AD if there is oneRead & interpret the AD if there is one Consult with the SDMConsult with the SDM Carry out the treatment planCarry out the treatment plan Expect disagreements & plan for resolutionExpect disagreements & plan for resolution

Temmy Latner Centre32 Benefits of ACP Symbol of HCPs commitment to patient empowermentSymbol of HCPs commitment to patient empowerment Reminds us to value pts/families as partners in planning EOL careReminds us to value pts/families as partners in planning EOL care Encourages planning for deathEncourages planning for death concrete aid for overcoming aversions concrete aid for overcoming aversions face hard decisions about dying face hard decisions about dying

Temmy Latner Centre33 Benefits of ACP Reduces future difficulties; provides guidance for pt’s wishes (“note in pocket”)Reduces future difficulties; provides guidance for pt’s wishes (“note in pocket”) May reduce/resolve conflict & disagreementMay reduce/resolve conflict & disagreement Can be completed at any timeCan be completed at any time Can be revised Can be revised

Temmy Latner Centre34 Common Pitfalls Failure to planFailure to plan Unclear patient preferencesUnclear patient preferences Complete (& sign!) ADComplete (& sign!) AD SDM absent for discussionsSDM absent for discussions SDM unwilling to follow wishesSDM unwilling to follow wishes AD inaccessibleAD inaccessible

Temmy Latner Centre35 Common Pitfalls Focus too narrowFocus too narrow DNR does not encompass all of ACP DNR does not encompass all of ACP Poor understanding of medical interventionsPoor understanding of medical interventions Communicative patients are ignoredCommunicative patients are ignored AD not read, not understood by HCPsAD not read, not understood by HCPs

Temmy Latner Centre36 Preparation for Final Days Advance planningAdvance planning personal choices, caregivers, setting personal choices, caregivers, setting Loss, grief, coping strategiesLoss, grief, coping strategies Educating / training patients, families & caregiversEducating / training patients, families & caregivers communication, tasks of caring communication, tasks of caring what to expect what to expect

Temmy Latner Centre37 ACP Practical Issues to Include Financial, legal affairsFinancial, legal affairs Organ donationOrgan donation AutopsyAutopsy Burial / cremationBurial / cremation Funeral / memorial servicesFuneral / memorial services GuardianshipGuardianship

Temmy Latner Centre38 Summary Advanced care planning requires open & direct communicationAdvanced care planning requires open & direct communication ADs ensure patient’s wishes known & honouredADs ensure patient’s wishes known & honoured ADs can guide health professionalsADs can guide health professionals