Advance Care Planning Health Care Consent Getting it

Advance Care Planning & Health Care Consent: Getting it Right. Why it Matters. Carol Sloan RN CHPCN(C) Acclaim Health, Director Palliative Care Consultation MH LHIN Palliative Care Network Multidisciplinary Clinical Co-Lead HPCO Health Care Consent & ACP Leadership Team csloan@acclaimhealth. ca

Faculty/Presenter Disclosure Presenter Name: Carol Sloan Relationships with commercial interests: “NOT APPLICABLE”

Disclosure of Commercial Support “NO COMMERCIAL SUPPORT”

Mitigating Potential Bias “NOT APPLICABLE”

Learning Objectives At the end of this session, participants will have a better understanding of: • What Health Care Consent and Advance Care Planning means in Ontario • What you need to know and understand about Health Care Consent and Advance Care Planning • Why you should be engaging in Advance Care Planning discussions with your patients?

True or False 1. For a person who lacks the mental capacity to make decisions, ACP conversations can occur with the substitute decision maker(s) on behalf of the person 2. Preferences for treatments should be documented in either an advance directive or a living will. 3. When a person appoints an Attorney for Personal Care only a lawyer has the authority to oversee the process. 4. Wishes expressed verbally have less utility than wishes that are written, signed and witnessed.

Why does it matter to GET THIS RIGHT? Outcome evidence indicates that ACP: • Improves patient & family satisfaction with EOL care 1 • Decreases caregiver distress & trauma 2 • Decreases unwanted investigations, interventions & treatments 3 • Increases the likelihood of dying in preferred setting 3 • Decreases hospitalizations & admissions to critical care 4 • Decreases cost to the health care system 5

Why Now? Auditor General 2014 Patients First Action Plan Transformation The Declaration of Partnership and Commitment to Action PA FRASER REPORT 2016 CDN Cancer Society HPC Report: Right to Care

Why does it matter to GET THIS RIGHT? Under Ontario Law, Advance Care Planning (identified as “wishes”) is part of the Health Care Consent Act but: Health care professionals must always obtain informed consent or refusal before treatment from either the mentally capable patient or their substitute decision maker (SDM)

What is Advance Care Planning? In Ontario, Advance Care Planning is a process that involves the mentally capable person: Identifying their substitute decision maker(s) (SDM) The SDM is the person(s) who would make health care decisions on the behalf of someone who is mentally incapable Discussing their wishes, values & beliefs with their SDM(s) Wahl Elder Law 2017 Including preferences for how they would like to be cared for if they were not capable to give or refuse consent

Advance Care Planning Wishes may be: • ORAL • In WRITING • Communicated by Alternative means Patient must be mentally CAPABLE to express Wishes, Values, Beliefs Later capable Wishes in any FORMAT prevail over earlier wishes This is true even if the previous wishes were in writing and the later wishes are oral Wahl Elder Law 2017

Healthcare Decision-Making Advance Care Planning Lacks the context of the current circumstances and occurs prior to a health event Health Event Proposed treatment options Goals of Care Conversation Treatment option selected Informed consent Drs. Jeff Myers & Nadia Incardona 2017 Treatment delivered

Healthcare Decision-Making Advance Care Planning The discussion helps prepare the SDM for Go. C conversations if the person loses capacity Health Event Proposed treatment options Goals of Care Conversation Treatment option selected Informed consent Drs. Jeff Myers & Nadia Incardona 2017 Treatment delivered

Healthcare Decision-Making Advance Care Planning Health Event NO! Proposed treatment options Goals of Care Conversation Treatment option selected Informed consent Drs. Jeff Myers & Nadia Incardona 2017 Treatment delivered

Why does it matter to GET THIS RIGHT? • The Law Commission of Ontario strongly recommends using terminology in the Health Care Consent Act (HCCA) and states that documents should expressly distinguish between consent and the recording of wishes, values, and beliefs. ” • There is tremendous confusion and incorrect practices about this distinction within Hospitals, LTC Homes and Community Health Care Providers across Ontario • Many Health Care Providers are currently noncompliant with the Ontario Legal Framework Wahl Elder Law 2017

Language Matters • The terms “Advanced Care Directives”, “Directive”, “Advance Care Plan”, and “Living Will” are not Ontario terminology nor used within the law. These terms should not be used in any policies, conversations and/or documents. • Many forms refer to a patient’s “Next of Kin” or “POA” rather than the patient’s SDM. Often health practitioners refer to a patient’s “Next of Kin”, as if this were a legal category of SDM. “Next of Kin and POA” should not be used in any policies, conversations and/or documents. The legal term is Substitute Decision Maker.

Obtaining informed Health Care Consent • Is more than ticking a box on a form • It involves a rich and robust discussion between a patient (or the incapable patient’s SDM) and the health care provider(s) • Is a DECISION made before treatment commences after communication about the patient’s condition, treatment options, and the risks, benefits, side effects, alternatives and what would happen if the patient refused the treatment has taken place • Includes planning about care (the immediate care options but also setting goals for care and future plans for care related to the patients’ present health condition)

Who needs to worry about GETTING THIS RIGHT? Hospitals 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 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

Who needs to worry about GETTING THIS RIGHT? Long Term Care 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 These are either confusing or incorrect elements

Why does it matter to GET THIS RIGHT? If we don’t get it right there is a risk of legal liability and unforeseen negative consequences, which could include: • Hospitals and LTC homes cited to their respective reporting and oversight bodies • LHIN found negligent under the Ministry-LHIN Accountability Agreement • Detrimental Media coverage locally and provincially • Civil suits • Physicians reported to the CPSO • Nurses Reported to CNO • Complaints lodged at the Law Society Wahl Elder Law 2017

Who is accountable to GET THIS RIGHT? • LTC Homes are required by the Long Term Care Homes Act to have all their forms / policies “certified” by legal counsel as compliant with the law • It is a matter of “when”, and not “if”, system performance indicators are implemented at a regional level and that ACP will be added to Accreditation Standards

What is required in all care settings to GET THIS RIGHT? Understanding of and proper implementation of the CONSENT process: • Consent comes from a PERSON not a document or any form developed in the process of advance care planning • Understanding that consent is required for ALL treatments or a Plan of Treatment • Understanding that consent must be informed - explaining the risks, benefits , side effects, alternatives and what happens if patient refuses treatment

What is required in all care settings to GET THIS RIGHT? • Proper assessment of patient's CAPACITY for treatment decision-making • Understanding of who is the treatment decision maker - Patient or incapable patient’s SDM • Understanding of WHO is the legal SDM and recording that properly on documents/forms

What is required in all care settings to GET THIS RIGHT? Understanding that a patient, when capable, may engage in ADVANCE CARE PLANNING which is: • Confirming that they want their AUTOMATIC SDM OR Choosing an SDM by preparing a POAPC AND • Communicating their Wishes, Values and Beliefs about care to help SDM make healthcare decisions for them in the future if/when they are incapable

What is required across all care settings to GET THIS RIGHT? • An understanding that SDMs cannot advance care plan for a patient • An understanding of the relationship between advance care planning, goals of care and informed consent

Substitute Decision Maker Hierarchy Confirm automatic SDM(s) OR Choose someone else and Complete a Power of Attorney for Personal Care document

Components of person-centred decisionmaking

Outcomes

What’s the clinical approach to GET THIS RIGHT? Less helpful Consent and ACP Conversations… Commonly used Think about it for a moment… “No heroics and no machines” Ever? Or when there is no chance of recovery? What about a 90% chance? “No tubes” What if the circumstances were short term and reversible… would a “tube” be acceptable? “Do everything” What does this mean? What “state of being” is to be achieved? How will the SDM know when everything has been done?

What’s the clinical approach to GET THIS RIGHT? More helpful Consent and ACP Conversations… Explore further “No heroics and no machines” What experiences have you had to bring you to this? What is it about “heroics and machines”? “No tubes” What is it about a tube that makes you not want one? “Do everything” What does it mean to not “do everything”? What worries or fears come to mind? How should we approach reconciling this?

What’s the clinical approach to GET THIS RIGHT? Outcomes of an ideal ACP conversation include: • SDM is aware of the person’s values and what he or she views as meaningful in life • SDM begins to understand how the person makes decisions (i. e. how they view benefit and burdens) • SDM has information that would guide decision making • Conversations that avoid statements such as “no machines” or “no heroics” or “no feeding tubes” without modifiers that would make these situations bearable or unbearable for the person • Be honest as possible re the illness trajectory and where the patient is currently on that trajectory

System Strategies to GET THIS RIGHT? • Promote an understanding of the role of the SDM in INTERPRETING and applying the patient's advance care planning conversations (wishes) • Promote an understanding that health care providers DO NOT take direction from any form of advance care planning (whether written, oral or communicated by alternative means) except in an emergency • Promote the understanding that code status (e. g. No CPR ) is NOT an advance care planning wish but requires an INFORMED CONSENT

What can you do? Identify if the Patient is Capable to do ACP Explain Requirement for consent and how ACP can help patient prepare future SDM for role Talk to the Patient about their illness understanding and their wishes, values and beliefs that would affect how they would want decisions made for them by their SDM Wahl Elder Law 2017 Help Patient identify who is their Automatic SDM and what to do to choose another SDM if they want someone else Encourage / facilitate the patient to talk with their Future SDM about these wishes, values, beliefs to prepare future SDM for providing consent

Ontario needs to GET THIS RIGHT • 100% of people in Ontario will die • CONSENT and ACP is relevant to 100% of Ontarians • It is NOT a matter of IF we get this right, it is now about HOW and WHEN we get this right • Effectiveness requires a system wide approach • Ideally a coordinated effort at provincial, regional and community levels is required for success

True or False 1. For a person who lacks the mental capacity to make decisions, ACP conversations can occur by substitute decision maker(s) on behalf of the person. False 2. Preferences for treatments should be documented in either an advance care directive or a living will. False 3. When a person appoints an Attorney for Personal Care only a lawyer has the authority to oversee the process. False 4. Wishes expressed verbally have less utility than wishes that are written, signed and witnessed. False

Where can you go to get assistance to GET THIS RIGHT? • HPCO Health Care Consent & ACP Community of Practice – – – Ontario HCC ACP Tool Kit Resource Review Process Access to Regional Champions Capacity Building through Broad Membership Provincial Inventory of ACP Initiatives Speak Up Ontario – http: //www. speakupontario. ca • Ontario ACP Workbook (hard copy, download, on-line versions) • Educational Presentations – HSP and Public • Provincial Best Practices Repository • Make a plan -Making my wishes known – on line tool to assist in conversations

http: //www. speakupontario. ca/resource/primary-caretoolkit-ontario/

Key Resource Documents to GET THIS RIGHT • Health Care Consent Advance Care Planning Community of Practice Resource Review • Health Care Consent Advance Care Planning Common Themes and Errors Tool • Leadership in Advance Care Planning in Ontario Tool • Leadership Screening Tool • Health Care Consent and Advance Care Planning Glossary of Terms for Ontario • Ontario Advance Care Planning Workbook • ACE Tip Sheet #1: Health Care Consent and Advance Care Planning the Basics • ACE Tip Sheet #2: HIERARCHY of Substitute Decision Makers (SDMs) in the Health Care Consent Act • ACE: Advance Care Planning – ONTARIO – SUMMARY – Health Care Consent Act • List of “approved” HCC and ACP resources on Speak UP Ontario

Key Reference Sites to GET THIS RIGHT • Key Reference Documents: • Ontario Health Care Consent Act, 1996 - https: //www. ontario. ca/laws/statute/96 h 02 • Ontario Substitute Decisions Act, 1992 - https: //www. ontario. ca/laws/statute/92 s 30 • Consent and Capacity Board - http: //www. ccboard. on. ca/scripts/english/aboutus/index. asp • Public Guardian and Trustee Office - https: //www. attorneygeneral. jus. gov. on. ca/english/family/pgt / • ACE Advocacy Centre for the Elderly - http: //www. acelaw. ca/advance_care_planning__publications. php • Hospice Palliative Care Ontario - http: //www. hpco. ca • Speak Up Ontario – http: //www. speakupontario. ca

If you want/need to have a resource review done? Contact Julie Darnay, Manager, Partnership & Communities of Practice Hospice Palliative Care Ontario Health Care Consent Advance Care Planning Community of Practice jdarnay@hpco. ca 1 -800 -349 -3111 ext. 30

Advance Care Planning in the Primary Care Setting: Putting It Into Practice Primary Care Clinic Day Dr. Vicky Chen, Sub-Region Clinical Lead, East Mississauga February 28, 2018

Questions 1) Why should we do this? Is this relevant? Is this important? 2) How are our patients going to react? 3) How are we supposed to do this? 4) How much time and effort is this going to take?

Script for Nurse or Administrative Assistant • “This is a new initiative recommended for everyone over the age of 65 regardless of health about making healthcare decisions. It is an important matter, we recommend that you read this pamphlet and let us know your decision to keep your file updated. Please speak to your physician/NP if you have any questions or concerns. ”

Lessons Learned Start the Conversation. Make it Routine. Circle Back.

Thank you for your attention! Questions? Mississauga Halton Local Health Integration Network 700 Dorval Drive, Suite 500 Oakville ON L 6 K 3 V 3 Tel: 905 -337 -7131 or 1 -866 -371 -5446 Fax: 905 -337 -8330 Email: mississaugahalton@lhins. on. ca www. mississaugahaltonlhin. on. ca