Advocacy Centre for the Elderly 2 Carlton Street, Ste. 701 Toronto, Ontario Advocacy Centre for the Elderly 20161

 ACE Services ◦ Legal advice and representation ◦ Public legal education programs ◦ Law Reform and Legal Policy Activities ◦ E newsletter –twice a year – Contact  2 Carlton Street, Suite 701 Toronto, ON M5B 1J   Judith A. Wahl Advocacy Centre for the Elderly 20162

 This presentation contains legal INFORMATION for educational purposes and not legal advice  If you need legal advice for a particular situation, please consult your own legal advisor Advocacy Centre for the Elderly 20163

 Do YOU understand Health Care Consent?  How Confidant are YOU about your knowledge of Advance Care Planning? Advocacy Centre for the Elderly 20164

For a person who lacks the mental capacity to make decisions, Advance Care Planning conversations can take place with substitute decision makers on behalf of the incapable person. True or False? Advocacy Centre for the Elderly

 FALSE Advocacy Centre for the Elderly 20166

Preferences for treatments should be documented in either an advance directive or a living will. True or False? Advocacy Centre for the Elderly 20167

 FALSE Advocacy Centre for the Elderly

When a person appoints an Attorney for Personal Care only a lawyer has the authority to oversee the process. True or False? Advocacy Centre for the Elderly 20169

 FALSE Advocacy Centre for the Elderly

Wishes expressed verbally are less "usable" than wishes that are written, signed and witnessed. True or False? Advocacy Centre for the Elderly

 FALSE Advocacy Centre for the Elderly

Advocacy Centre for the Elderly  ACE prepared a report for the Law Commission of Ontario with the law firm of Dykeman Dewhirst O’Brien LLP in 2014 on HCC and ACP.  We reviewed the operationalization of health care consent and advance care planning by health practitioners and organizations in the province of Ontario.  Our final report can be accessed at: commissioned-paper-ace-ddohttp://lco-cdo.org/en/capacity-guardianship- commissioned-paper-ace-ddo

Advocacy Centre for the Elderly  Ontario law is different than the other jurisdictions we used as comparators.  In some of the other Canadian provinces, a written “advance directive” may be equivalent to informed consent to treatment.  In some other jurisdictions, written “advance directives” may be interpreted and applied directly by physicians.  THIS IS NOT THE LAW IN ONTARIO.

Advocacy Centre for the Elderly  Many health care organizations were using legally incorrect forms and policies (including documents from other jurisdictions without adaptation for Ontario law).  This causes confusion and doesn’t help Health practitioners understand the requirement to get an informed consent at the time of treatment from a capable patient or the incapable patient’s SDM EVEN IF Advance Care Planning Wishes exist in the chart

Advocacy Centre for the Elderly Biggest Problem in Ontario  Everyone talks about advance care planning, but no one talks about consent!  Patients are often immediately asked to express future care wishes, with little or no context, and patients are rarely told how their statements will be used.  Health practitioners should “close the loop” and emphasize obtaining informed consent.

 Health Care Consent ◦ What is consent? How do you have that conversation? ◦ When does a health professional need to get consent from before treatment? ◦ What happens if a patient is not mentally capable? Who can provide consent? ◦ What are health practitioners’ obligations when seeking consent from a substitute decision-maker  Advance Care planning ◦ What is advance care planning under Ontario law? ◦ How do Health Care Consent and Advance Care Planning connect? ◦ Who takes direction from a Advance Care Planning wishes? ◦ How do you have that conversation about Advance Care Planning? Advocacy Centre for the Elderly

Advocacy Centre for the Elderly When I say: Health Care Consent ? What does this mean to you?

Advocacy Centre for the Elderly What is Health Care Consent?  Health practitioners need to obtain INFORMED consent or refusal of consent to a treatment from the patient, if capable, before treating, except in an emergency  If the patient is not capable, the consent is given by the patient’s SDM  Health care consent is an informed and contextualized DECISION.  This is the same whether its treatment about end of life care or treatment under any other circumstances

 To determine whether the PATIENT is CAPABLE of giving or refusing consent to the treatment decision  To determine WHO is the patient’s RIGHT SDM if the patient is incapable  To inform the treatment decision maker – whether the Patient or the SDM- about the PATIENT’S CONDITION and the possible TREATMENT OPTIONS Advocacy Centre for the Elderly

 When seeking consent, health practitioners) have a duty to COMMUNICATE with patients (or the incapable patient’s substitute decision-maker) about the patient’s present condition and the available treatment options Information needed to be communicated includes info on the risks, benefits, side effects, alternatives to the treatment, and what happens if the treatment is refused  Consent ALWAYS comes from a person, not a piece of paper - not from a patient’s written “advance care plan” nor from patient’s wishes noted in medical records Advocacy Centre for the Elderly

 Even if a patient has provided some form of “Advance Care Plan” to the health providers and expressed “wishes” about future care, those wishes should not be used to determine treatment options offered  Wishes may have been expressed out of context without knowledge of how the patients condition has changed/ developed and without knowledge or understanding of possible treatment option - PATIENTS may CHANGE THEIR MINDS after getting all the INFO to make an informed consent Advocacy Centre for the Elderly

1. Make sure patient / SDM understands what is the patient's PRESENT condition 2. Discuss treatment options and RISKS, BENEFITS, SIDE EFFECTS, ALTERNATIVES to the treatment, and what would happen if treatment refused 3. Personalize discussion to the patient by talking with patient about Goals of Care 4. GET INFORMED CONSENT to a treatment or Plan of treatment Advocacy Centre for the Elderly

 HCCA, s Must relate to the treatment 2.Must be informed 3.Must be given voluntarily 4Must not have been obtained through misrepresentation or fraud Advocacy Centre for the Elderly

Advocacy Centre for the Elderly The patient must receive information on the: Nature of the treatment Expected benefits of the treatment Material risks of the treatment Material side effects Alternative course of action Likely consequences of not having the treatment

 The right to informed consent is a requirement that cannot be waived by the patient.  Even where the patient has completed an “advance directive”, the patient or their SDM must still give or refuse informed consent (except in an emergency). Advocacy Centre for the Elderly

 A patient can give an informed consent to a treatment that takes place or is withheld in the future if that treatment relates to the patient’s PRESENT HEALTH CONDITION  This is not Advance Care Planning, but is Consent  Patients at end of life can CONSENT to No CPR/DNR and this is NOT advance care planning Advocacy Centre for the Elderly

developed by one or more Health practitioners deals with one or more of health problems that a person has and may, in addition, deal with one or more of the health problems that the person is likely to have in the future given the person’s current health condition, and provides for the administration to the person of various treatments or courses of treatment and may, in addition, provides for withholding or withdrawal of treatment in light of person’s current health condition. BOTTOM LINE: PLANS OF TREATMENT MUST BE GROUNDED IN THE PATIENT’S PRESENT HEALTH CONDITION. This is NOT a Preconsent. This is NOT an advance care plan. Both Patients and SDMs ( where appropriate) may CONSENT to Plans of Treatment Advocacy Centre for the Elderly

 An informed consent is a DECISION by a patient or SDM of an incapable patient based on knowledge of the patient’s present condition and treatment options  It is a DECISION within a CONTEXT  “Care Planning” (not a “legal” term) - trying treatment options, goal planning, setting goals of care etc. is part of the consent process and is NOT advance care planning Advocacy Centre for the Elderly

 How are patients / their SDMs are asked about Code Status when in hospitals or other health facilities before this is listed in the chart?  Is an INFORMED CONSENT being obtained to the Code status ? Code status is NOT about “Goals of Care” its about INFORMED CONSENT to CPR or No CPR Code status is NOT advance care planning Advocacy Centre for the Elderly

Advocacy Centre for the Elderly What about Emergencies? In an EMERGENCY, health care providers do not need consent in order to treat. But, they must follow any known WISHES of the patient in respect to the proposed treatment.

 Meaning of “emergency” S.25(1) … there is an emergency if the person for whom the treatment is proposed is apparently experiencing severe suffering or is at risk, if the treatment is not administered promptly, of sustaining serious bodily harm. Advocacy Centre for the Elderly

Advocacy Centre for the Elderly When I say: Advance Care Planning?? What does this mean to you?

1. IDENTIFICATION of the capable patient’s future Substitute Decision-Maker (SDM), by either a) confirming that the patient is satisfied with their default/ automatic Substitute Decision-Maker in the hierarchy list that is in the Health Care Consent Act OR b)Patients choosing someone else to act as SDM by preparing a Power of Attorney for Personal Care (a formal written document). 2.WISHES, VALUES, AND BELIEFS – discussing with the capable patient about his/her wishes, values and beliefs, and more generally how he/she would like to be cared for in the event of incapacity to give or refuse consent. These are used as a GUIDE for the SDMs NOT the Health practitioners Advocacy Centre for the Elderly

 Only the PATIENT when capable can prepare a POA Personal Care  Only the Patient may express his or her own wishes about future care and treatment  SDMs cannot do Advance Care Planning and ONLY provide consent or refuse consent to treatment on behalf of a patient incapable for treatment Advocacy Centre for the Elderly

 May ONLY be done by PATIENTS not SDMs  CONFIRMATION or CHOICE of SDM by the PATIENT  Communication of the Patients WISHES, Values, Beliefs that they want considered by the SDM when the SDM makes a decisions about treatment for the patient in the future Advocacy Centre for the Elderly

Advance Care Planning is a USEFUL and IMPORTANT process BUT Health Practitioners NEED to get an Informed Consent before treatment – THAT is Patient Centred Care Advocacy Centre for the Elderly

 Wishes do not need to be expressed in writing. Wishes may be expressed in any form at any time when the patient is mentally capable (Oral, written, communicated by other means)  Later wishes, however communicated, expressed while capable prevail over earlier wishes. A recent capable oral wish will trump an older capable written wish.  This is true even if the previous wishes were in writing and the later wishes are oral Advocacy Centre for the Elderly

 Advance Care Planning does not need to be about specific treatments that a person would want to not want  It is very difficult to anticipate what treatments one would want for themselves as people don’t know how their health condition will progress or what the effect of particular treatments would be  ACP Wishes and explanations of a person’s values and beliefs may help the SDM make better decisions for the patient as these wishes help the SDM understand: ◦ who the patient is, ◦ how they make choices for themselves, ◦ what they think is important to themselves what influences their decision making Advocacy Centre for the Elderly

 Advance care planning “wishes” should not be used to limit/ restrict treatment options without first talking to the patient/ SDM of the incapable patient about the patient’s PRESENT condition  Why? Because “wishes” may have been expressed out of context, without information of options, in a summary way, but with context, patient is NOW able to give an informed DECISION (consent) and SDM is better able to apply and interpret previous wishes to then make a DECISION (Consent) Advocacy Centre for the Elderly

 Any Tools used for Consent and ACP that START asking Patients for their WISHES about care without: ◦ First discussing with the patient their PRESENT health condition ◦ Explaining HOW the wishes will be used ◦ Explaining that the Health Practitioners do NOT follow any wishes except in an emergency ◦ Explaining that wishes are not Consents and that before any treatments are provided, the patient will have the chance to know what are their treatment options and that they have the right get information to make an INFORMED DECISION ARE NOT GOOD TOOLS!! Advocacy Centre for the Elderly

 ACP is NOT about DECISIONS  ACP is about WISHES, VALUES, BELIEFS to help the SDM to make DECISIONS about treatment and give or refuse consent Advocacy Centre for the Elderly

 May someone other than the health care practitioner treating the patient, or a member of that health team, engage in discussions about advance care planning? ◦ If yes, is there anything that person should NOT be discussing? ◦ As “wishes” (statements that are not informed consents) about treatment may be followed directly in an emergency by health practitioners, does this influence how that part of advance care planning should be done? ◦ As the wishes/ values/ beliefs are primarily communications to the future SDM how does that affect how ACP should be done ? Advocacy Centre for the Elderly

 Advance Directive? WHAT is this???  Living will? What is this????  Level of Care Directive? What is this???? THESE ARE NOT ONTARIO TERMS and Should NOT be used Advocacy Centre for the Elderly

 The terms “advance directive” and “living will” do NOT appear in Ontario Law.  This terminology should NOT be used in documents/ records  Instead – use terminology such as “advance care planning” or “capable wishes” or “wishes, values, beliefs”  The Health Care Consent Act only refers to the word “wishes”. If a document says it is an ‘advance directive” or a “living will”, under Ontario law it is just an expression of wishes, to be interpreted by the SDM alongside other oral and written expressions of wishes.  BUT NOTE - Only a formal written Power of Attorney for Personal Care gives authority to name an SDM Advocacy Centre for the Elderly

Advocacy Centre for the Elderly Health Care Consent and Advance Care Planning Advance Care Plan Future health condition the Future health condition the implications for which may not implications for which may not be easily known to the person be easily known to the person Consent to a Treatment or Plan of Treatment Current health Current health condition, where the condition, where the Implications are known Implications are known ConsentConsentConsentConsent The risk: You think you have consent when you don’t The risk: You don’t think you have consent when you do

 Need to talk to patients or appropriate SDMs to get INFORMED consent to a treatment or PLAN of treatment  THESE CONVERSATIONS are fundamental before providing treatment both in law and ethics Advocacy Centre for the Elderly

Advocacy Centre for the Elderly How does Health Care Consent relate to Advance Care Planning?  Under Ontario law, advance care planning is part of the law of informed consent.  Patient “wishes” are interpreted by the SDM – not the health practitioner.  Advance Care Planning discussions about wishes, values, and beliefs should help the SDM make better decisions for the patient when the patient may be incapable

Advocacy Centre for the Elderly

 Are SDMs the same as “Next of Kin”?  Are all SDMs attorneys in Powers of Attorney for Personal Care?  If the patient has not “legally chosen an SDM,  May the health practitioners decide what treatments the patient gets? Advocacy Centre for the Elderly

 Who is the patient’s SDM and what is the SDM’s role? Advocacy Centre for the Elderly

Advocacy Centre for the Elderly Guardian of person 2. Attorney in POAPC 3. Representative appointed by the Consent and Capacity Board 4. Spouse or partner 5. Child or parent or CAS (person with right of custody) 6. Parent with right of access 7. Brother or sister 8. Any other relative 9. Office of the Public Guardian and Trustee * See handout for definitions of terms

Advocacy Centre for the Elderly The person highest in the hierarchy may give or refuse consent only if he or she is: a) Capable in respect to the treatment; b) At least 16 years old unless the parent of the incapable person; c) Not prohibited by a court order or separation agreement from acting as SDM; d) Available (including via electronic communications); and, e) Willing to act as SDM. BOTTOM LINE: IT IS THE OBLIGATION OF THE HEALTH PRACTITIONER OBTAINING CONSENT FROM AN SDM TO ENSURE THESE REQUIREMENTS ARE MET.

 If highest ranking SDM is not capable to make treatment decision – Then go to next SDM on the list  If SDM not available – then go to next ranking SDM  If SDM not willing to act, then go to next ranking SDM  If person claims to be attorney – ask for the POAPC to confirm this Advocacy Centre for the Elderly

Advocacy Centre for the Elderly Only turn to an SDM for consent when the patient is incapable. List is hierarchical (i.e. start at the top and work your way down). All persons on same rung rank equally (i.e. all brothers and sisters are equally SDMs). Every person ALWAYS has an SDM if they are incapable. The Ontario Public Guardian and Trustee is required to act as the SDM if no one on the hierarchy is available or if there is a conflict between equally ranked SDMs.

 May an SDM refuse to act as SDM if he / she was named as Attorney in a POA Personal care? YES- then turn to next highest ranking SDM  May an SDM refuse to act if highest in hierarchy for a patient? YES- if not wiling then turn to next highest ranking Advocacy Centre for the Elderly

 Multiple equal ranking SDMs- can you take direction from ONE of the group? Why and what should be recorded? Or if they all want to act as SDMs but can’t agree – what do you as Health practitioner do?  If Multiples and equal ranking, THEY must decide amongst themselves if all will be the SDMs together, or one or more will be the SDMs and the others will drop out. If more than one acts and the ones acting cant agree then turn to the OPGT Treatment Decisions Unit if you cant resolve disagreement. Advocacy Centre for the Elderly

 In making decisions on behalf of an incapable patient, SDMs have to:  Follow any applicable wishes that were expressed by the patient when capable; or  If no applicable wishes were expressed when the patient was capable, make decisions in the patient’s best interest (including considering the patient’s values, beliefs and any other wishes expressed by the patient) Advocacy Centre for the Elderly

SDM to consider: a)values and beliefs b)other wishes (i.e. expressed while incapable) c)whether treatment likely to: i) improve condition ii) prevent condition from deteriorating iii) reduce the extent or rate of deterioration d) whether condition likely to improve or remain the same or deteriorate without the treatment e) if benefit outweighs risks f)whether less restrictive or less intrusive treatment as beneficial as treatment proposed Advocacy Centre for the Elderly

 If SDM believes that patient would have changed her wish if she knew what her present health condition would be and treatment options, SDM may go to Consent and Capacity Board asking that they will not follow that wish  If SDM believes that a wish is impossible to follow then SDM does not need to follow it Advocacy Centre for the Elderly

 SDM is the “interpreter” of the patient's wishes, values and beliefs and must determine: ◦ whether the wishes of the patient were expressed when the patient was still capable (and were expressed voluntarily); ◦ whether the wishes are the last known capable wishes; ◦ what the patient meant in that wish; ◦ whether the wishes are applicable to the particular decision at hand; and, ◦ If there are no applicable/capable wishes, how the patient’s values, beliefs, and incapable/inapplicable wishes would apply to the patient’s best interest. Advocacy Centre for the Elderly

 Everyone talks about advance care planning “wishes”, but few talk about consent and confirmation or choice of future SDMs  Patients are often immediately asked to express future care wishes but patients are rarely told how their statements will be used.  Health practitioners should “close the loop” and emphasize obtaining informed consent.  Advance Care Planning is important but doesn’t replace having conversations that lead to an informed consent Advocacy Centre for the Elderly

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What is required across all care settings to GET THIS RIGHT? 64

 TOOLS, POLICIES, PRACTICES  ARE the ones YOU use COMPLIANT WITH ONTARIO LAW?? Advocacy Centre for the Elderly

Patient’s Care Wishes  Patient has requested to discuss AD’s  Patient has a written directive and  copy has been requested  copy has been obtained and placed in record  Patient has discussed care wishes with SDM(s) Has the patient / SDM verbally expressed care wishes?  Yes  No If “yes” summarize any information provided here, and notify physician: Has the physician been informed?  Yes  No (Note, if care wish information is provided physician must be notified.) Name of Physician:_____________________ Date:________________ Time:_____________ Name of Healthcare professional Completing this form:_________ Date:_____________ 66

Patient’s Care Wishes  Patient has requested to discuss AD’s  Patient has a written directive and  copy has been requested  copy has been obtained and placed in record  Patient has discussed care wishes with SDM(s) Has the patient / SDM verbally expressed care wishes?  Yes  No If “yes” summarize any information provided here, and notify physician: Has the physician been informed?  Yes  No (Note, if care wish information is provided physician must be notified.) Name of Physician:_____________________ Date:________________ Time:_____________ Name of Healthcare professional Completing this form:_________ Date:_____________ These are either confusing or incorrect elements Advocacy Centre for the Elderly

Advocacy Centre for the Elderly Advance Directive for Treatment Resident’s Name: ___________________________________________ If the Resident is incapable, Substitute Decision-Maker (SDM): _______________________________ Health Practitioner recording consent: ______________________________ Date of consent discussion: _________________________________ Name and Description of Directive After discussion, the Resident or SDM has decided that in the event of life threatening illness, the Resident is to receive treatment as follows:  COMFORT MEASURES ONLY  COMFORT MEASURES WITH ADDITIONAL TREATMENT AVAILABLE AT THE HOME  TRANSFER TO ACUTE CARE HOSPITAL WITHOUT CARDIOPULMONARY RESUSCITATION  TRANSFER TO ACUTE CARE HOSPITAL WITH CARDIOPULMONARY RESUSCITATION Informed Consent I have been provided the following information by the Home: Nature of the directive  Yes Expected benefits of the directive  Yes Material risks of the directive  Yes Material side effects of the directive  Yes Alternative courses of action  Yes Likely consequences of not having the directive  Yes

69 Advance Directive for Treatment Resident’s Name: ___________________________________________ If the Resident is incapable, Substitute Decision-Maker (SDM): _______________________________ Health Practitioner recording consent: ______________________________ Date of consent discussion: _________________________________ Name and Description of Directive After discussion, the Resident or SDM has decided that in the event of life threatening illness, the Resident is to receive treatment as follows:  COMFORT MEASURES ONLY  COMFORT MEASURES WITH ADDITIONAL TREATMENT AVAILABLE AT THE HOME  TRANSFER TO ACUTE CARE HOSPITAL WITHOUT CARDIOPULMONARY RESUSCITATION  TRANSFER TO ACUTE CARE HOSPITAL WITH CARDIOPULMONARY RESUSCITATION Informed Consent I have been provided the following information by the Home: Nature of the directive  Yes Expected benefits of the directive  Yes Material risks of the directive  Yes Material side effects of the directive  Yes Alternative courses of action  Yes Likely consequences of not having the directive  Yes

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Legal liability / Complaints of Professional Misconduct may arise where:  Health Practitioners incorrectly believe they have obtained, or do not need to obtain, informed consent because they have an “advance care plan ”  Health Facilities use forms/ policies/ practices that do not comply with Ontario law Advocacy Centre for the Elderly

1.Education: – People & SDMs: Aware Informed Have tools – Clinician competence: Attitudes/Aware Knowledge/Information – Legal framework – Actual conversation Skills 2.Documentation/EMR – Standardized – Accessible 3.Quality improvement 4.System wide planning & coordination To improve the quality and effectiveness of ACP, culture must be changed. Culture change requires: Advocacy Centre for the Elderly

 POLL Questions and Slides 72 and 73 HPCO HCC and ACP Community of Practice  Slide 46 Chris Sherwood  Slides 63 and 64 – See Credits on Slide Advocacy Centre for the Elderly

 Thank you!! Judith A. Wahl Advocacy Centre for the Elderly Advocacy Centre for the Elderly