A RESIDENT’S RIGHT TO CHOOSE: Implementing the first MAID death in Ontario Long Term Care Presented by: Jill Knowlton, Managing Director Sarah Hind, Director of Clinical Services Lisa Corrente, Partner, Torkin Manes LLP Mrs. Wendy Taylor, Family Member April 5 2017

Overview John’s Story Receiving the Request Examining Values and the Paradigm Shift Making a Referral Legislation, Policy + Legal Requirements Conscientious Objector Process Focus on the Resident + Supporting the Family Support to Co residents, Staff and Others Current Status of Legislation + Legal Challenges

John Taylor’s Story Passion for Rock Climbing

John Taylor’s Story A Daughter’s Wedding

John Taylor’s Story Solving a Problem

John Taylor’s Story Together from beginning to end

The Request March 28, 2016: First request for a Meeting Exploratory April, 2016: Meeting with Medical Director Outlining the Home’s position Discussion of The Carter v. Canada Decision 2015 SCC suspended declaration of constitutional invalidity until June 6, 2016 May, 2016: Third Meeting –John’s Position is Clear LTC is “ground zero” for a death at home

The Request June 6, 2016: Fourth Meeting Disappointment – assisted dying is legal…BUT Begin discussion around applying to Superior Court for an order allowing PAD on meeting Carter criteria Lawyer now involved ---Court order is a practical necessity June 17, 2016: Fifth Meeting Federal Bill C-14 receives Royal Assent Celebration July 1, 2016 to August 3, 2016: Multiple Meetings Plan put in motion Assisted death August 3

Why Delay? Delays from request to implementation are problematic. Gaps in legislation and absence of regulations Home not ready: policy, forms, education, supports Vacations: Hospital Clinicians, Home Staff and Family Requirement for venous access: appointment at hospital for PICC line as IV access was not achievable Medication orders and pharmacy access to drugs

Medication Schedule Anxiolytic Midazolam 1 mg/mL concentration Provide 4 - 5 mL bottles Require 2 kits of 10 mg each (2nd kit to be returned unused) Need 2 - 10 mL syringes  Local Anaesthetic Lidocaine without epinephrine 20 mg/mL concentration 2 mL or 40 mg in a syringe Provide 1

Medication Schedule Coma Inducing Agent Propofol 10 mg/mL concentration Provide 4 - 50 mL bottles Require 2 kits of 1000 mg each (2nd kit to be returned unused) Need 2 - 60 mL syringes Neuromuscular Blocker Rocuronium bromide 10 mg/mL concentration Provide 4 - 10 mL bottles Require 2 kits of 200 mg each (2nd kit to be returned unused) Need 2 - 10 mL syringes  Also need NaCl 0.9% saline solution (1 litre) with IV tubing and extra 10 mL syringes and antiseptic swabs.

Role of Senior Leader MAID Lead – central point of contact: info in and out Liaise with Medical Director, Attending Physicians, management team, corporate office, staff, resident, family, MOH representatives, Chief Coroner’s office, legal counsel Guide and direct Ensuring policy in place and is known Ensuring external practitioners follow the Home’s policies Ensuring a process to conscientiously object Ensuring support to residents, families, staff and others

Paradigm Shift Organizational + Individual Values and Beliefs Do No Harm Assisted Suicide Resident Rights Resident Rights MAID Values and Beliefs

Examine STAFF – 2 sessions/1 week apart around the clock Small groups (no more than 8 to 10) Maximum 30 minutes By home area team or department – support one another, sit together Make it safe – create a “No Risk Table” Start with required information such as the legislation; resident rights; CNO Guidelines; RNAO/RPNAO; Home’s policy and other resources Review the Home’s values Leave with a question: what are your personal values and beliefs? Provide mechanism for questions or further discussion and consider access to all shifts

Examine Staff: part 2 - Reflection One week later reconvene in small groups Sit together Use open ended questions Seek out responses to, “I feel, I sense, I value/believe” Be prepared to start the conversation Revisit key information – right to be a conscientious objector + not necessary to state why/free from harassment Focus on resident’s right to privacy Make it safe + provide supports

Conscientious Objector Explain what this means Distribute forms and have them readily available Create a process that is confidential for return of forms Create a tracking sheet Organize the schedule for the day well in advance Consider allowing personal days, vacation days Consider that staff may change their minds Consider the safety of other residents – may require you have extra staff on that day

Emotional Pitfalls Talking the resident out of it Talking to family members and visitors and attempting to influence them to change the resident’s mind Harassing co workers who conscientiously object Holding Prayer Circles onsite and through social media Calling in sick Not respecting the resident’s privacy Attempting to influence co residents Attempting to influence co workers

Residents and Families We are a Home Consider: Education for residents and families Opportunity to discuss personal values and beliefs Opportunity to “conscientiously object” Informing them of the day’s routine; any staff changes Providing support and grief counselling Opportunity to be part of Honour Guard

Policy Early days: Interim Absence of regulations and gaps in legislation Development – Relied upon: Interim guidelines published by CPSO, CNO, OCP CMA Principles-based Recommendations Discussion Papers by Joint Centre for Bioethics, U of T Provincial-Territorial Expert Advisory Group on PAD Report of the Special Joint Committee on PAD Palliative and End-of-Life Care Provincial Roundtable Report

Policy Consultation with the Office of the Chief Coroner with special mention of Dr. Dirk Huyer, Chief Coroner and the Ministry of Health and Long Term Care Reviewed by our lawyer with input received Included required documentation forms supplied by the Ministry of Health: “Clinician Aides” Consultation with feedback requested from Medical Director, Consultant Pharmacist and members of the Interprofessional Team Circulated to staff as “Interim”

External Practitioners Ensure: Clear understanding of the Home’s policy and requirements for documentation Informed of LTCHA and associated regulations that must be followed Informed of primary contact (ie. MAID Lead) Provision of medication orders to pharmacist early Provision of list of supplies and equipment required from the Home Communication with the Resident, Family (with consent) and Home Staff

LTCHA + Regulations Consider: Role of attending physician and external consultants (O Reg. s. 83) Obtaining MAID drugs from the Home’s pharmacy (O Reg. s. 122) Documentation requirements on the Resident’s Health Record (O Reg. s. 231) Certification of Forms (LTCHA 2007 s. 80) Safe storage and destruction of MAID drugs (O Reg. s. 129, 136) Institutional Patient Death Record reporting (Coroners Act) Critical Incident reporting (O Reg. s. 7)

Awaiting passage of Bill C-14 by the Senate The Real Event The request is made known to the Home’s staff The Medical Director with the Managing Director meet with the resident and confirm request The resident’s concerns about terminal condition are explored Alternate treatment options are shared such as terminal sedation and dialing down the respirator This meeting is documented in the resident’s chart Awaiting passage of Bill C-14 by the Senate

The Real Event Home considers its ability to implement MAID death in the absence of regulations and gaps in legislation. Resident rejects death in hospital. Home consults with lawyer and advised that it best to proceed and focus on the Resident’s Right to die at Home. Resident consults his ethicist and physician contacts at the hospital (made his own referral).

The Real Event Two physicians from the hospital who are considered independent of each other schedule an appointment to meet with resident in the Home. Arrive with hospital policy, forms in hand. Chart entry is not made on the health record in the Home. Resident eligibility for MAID is confirmed and informed consent obtained, primary medical practitioner confirms eligibility and reflection period followed by secondary medical practitioner Still NO Notes on the Health Record

The Real Event 7. MAID Lead meets with resident. Informs of requirements of the Home. Director of Clinical Services contacts lead physician and explains documentation requirements and requests that the Home’s forms are completed and faxed to the Home. 8. Clinician forms A, B and C are now executed. 9. Notes being added to the Health Record. 10. Attending physician is added as a cc to all communications. 11. Drugs are ordered from the Home’s contracted pharmacy. 12. Drugs are stored in separately, locked location – 2 kits

Reporting to the MOHLTC Lawyer communicates with the MOHLTC on behalf of the Home informing them of the MAID request and eligibility. MOHLTC advises that the Home ensure the MAID request is in the plan of care; advises that the Home’s concerns regarding certain regulations will be overlooked with the focus on the Resident’s Right to an assisted death at Home.

Notifying the Coroner Lawyer communicates with Chief Coroner New Interim process in place until regulatory changes are made – due Jan 1, 2017. Only 3 coroners handling death by MAID – Dr. Huyer as the chief and 2 of his deputies – this has CHANGED Do not complete IPDR - emphasized The MD who administers MAID will notify the Coroner Home must document in the resident health record that the MD made the call and the report to the office of the Chief Coroner

The Real Event Home prepares all documents relating to the request for MAID: Chart notes Consults Opinions This is all faxed to the office of the Chief Coroner. Note: the request for MAID, the assessment for eligibility and 2 witness statements have been confirmed by the Chief Coroner as required on the Home’s chart.

The Real Event Coroner will call the family and ask if funeral home arrangements are made to have the body transferred to a regional pathology centre. If no funeral arrangements, then the Coroner’s office will make arrangements at their expense to transport the body to the regional pathology centre. Arm band identifying the resident must be on the body. Have one ready to put on the body. Coroner will examine the body at the pathology unit and extract a blood sample – NOW: at the discretion of the Coroner

The Real Event Won’t do anything more intrusive unless needed Will have the body for about 24 hours and notify the family when it is ready to be moved to the funeral home Death Certificate will be completed by the Coroner at the Regional Pathology Centre and will state the cause of death as: SUICIDE. Second level cause will be the disease. The Home is to report the cause of death as Suicide to Service Ontario. It is not reported as a Critical Incident.

Best Practices Walk through day’s events with team two to three days in advance and with family one day in advance Prepare for the final question Add additional PSW and registered staff on the Home Area Provide more frequent breaks for staff involved if time out is required Assign a senior staff member to the family and visitors ensuring they are supported Hospitality – stay over suite available, refreshments and meals, dedicated room for visiting if large numbers expected Flowers for the family

Best Practices Honour the resident’s last wishes – Scotch Party! Persons present at time of death and request passage to be read at Honour Guard Communicate daily with your care team members, resident and family Provide a point of contact for staff for more information Create a checklist for equipment, supplies and required documentation Confirm all documentation is complete prior to clinicians leaving the Home Provide a structured debrief for staff and ongoing Invite residents and visitors to be part of the Honour Guard

Lessons Learned Provide education to residents and families so they are generally informed about MAID Provide supports for residents who may hold incompatible values and beliefs Plan to have activities off the Home Area for residents who wish to be out of the area Provide follow up support and grief counselling to co residents Support residents to memorialize the deceased person

Challenge “Be prepared for MAID and what else the future holds.” For John, he showed his courage and strength by ensuring MAID was available in LTC. His disease controlled him but he would not allow it to control his final decision – his death. He wanted this to be his LEGACY.

MEDICAL ASSISTANCE IN DYING: The Past, the Present and the Future Together We Care – April 5, 2017 Presented by: Lisa Corrente

Overview The Past : Lessons Learned The Present: Recent Statistics and Ongoing Legal Challenges/Reviews The Future: Bill 84

The Past: Lessons Learned Timelines Typical timeline – on average, 2 weeks from signing the patient’s written request, including: assessments for eligibility by 2 independent practitioners 10-day reflection period In my experience, timelines have been longer for long-term care/retirement homes transfers to hospital (e.g. PICC line) conscientious objections / availability resident’s wishes

The Past: Lessons Learned Refection Period Must be 10 clear days between resident’s written request and provision of medication, unless: resident’s loss of capacity or death is imminent There have been cases in which medical practitioners have improperly shortened reflection period in other circumstances e.g. patient was in too much pain, patient wanted treatment earlier Home’s MAiD lead has to stay informed and oversee process to ensure compliance

The Past: Lessons Learned Witnesses Requirement for 2 independent witnesses Witnesses cannot: directly provide health care services or personal care to the resident be the owner or operator of any health care facility know or believe they are a beneficiary under a will (excludes most family members) Difficult to identify independent witnesses in LTC/retirement settings? Friends (willingness, availability, etc.) Health care provider in the home, if they do not own the home and are not directly involved in resident’s health care or personal care Home’s policy Staff feeling pressured by resident requests

The Past: Lessons Learned Conscientious Objections Not uncommon for medical practitioner (e.g. medical director or attending physician) or nurse practitioner to conscientiously object moral objection lack knowledge or experience uncertainty regarding “natural death has become reasonably foreseeable” Use of Clinician Referral Service or resident’s specialist (outside of home) Need to familiarize outside practitioners of home’s obligations and policies

The Past: Lessons Learned Record-Keeping Coroner’s Office has expressed concern about variation in record- keeping reduced amount of documentation insufficient detail Medical and nurse practitioners have not documented effective referrals Use of Ministry’s Clinician Aids has been helpful – keep in resident’s file Document process and interactions in progress notes and plan of care Outside practitioners should be documenting in resident’s records

The Past: Lessons Learned Drug Protocol All health care providers involved in MAiD process must coordinate and communicate with one another appropriate drug protocol (CPSO website) early notification of the pharmacy service provider No self-administration within the home

The Present: Most Recent Statistics Sex: Female: 151 Male: 154 Age: Average Age: 74 Youngest: 35 Oldest: 101 Office of the Chief Coroner/Ontario Forensic Pathology Service MAiD Data

The Present: Most Recent Statistics County MAiD Cases Brant County < 5 Bruce County Cochrane District Dufferin County Durham Regional Municipality 5 Elgin County Essex County Frontenac County 12 Grey County Haldimand-Norfolk Regional Municipality Halton Regional Municipality 11 Hamilton Division 17 Hastings County Lambton County Lanark County Leeds & Grenville United Counties 8 Kawartha Lakes Division Kenora District Middlesex County 13 County MAiD Cases Muskoka District Municipality < 5 Niagara Regional Municipality 9 Nipissing District Northumberland County Ottawa Division 35 Parry Sound District Peel Regional Municipality 17 Peterborough County 10 Prescott & Russell United Counties Rainy River District Simcoe County 13 Stormont, Dundas & Glengarry United Counties Greater Sudbury Division Timiskaming District Toronto Division 81 Thunder Bay District Waterloo Regional Municipality 6 Wellington County York Regional Municipality 15

The Present: Legal Challenges/Reviews Lamb v. Canada – constitutional challenge to federal legislation filed by the BCCLA Faith groups representing over 4,700 Christian doctors across Canada have launched a judicial review application in the Ontario Divisional Court arguing that the CPSO’s MAiD policy, requiring effective referrals to be made by physicians who have a conscientious objection, is a Charter violation. Council of Canadian Academies is undertaking a review of circumstances outside of the current scope of MAiD: requests by mature minors advance requests requests where mental illness is the sole underlying medical condition Reports expected in 2018

The Future: Bill 84 Medical Assistance in Dying Statute Law Amendment Act, 2017 Proposed provincial legislation which provides some clarity regarding decriminalization of medically assisted death Introduced on December 7, 2016 Passed 2nd Reading – March 9, 2017 Standing Committee on Finance & Economic Affairs held public meetings on March 23 and 30, 2017 If passed, will amend 6 Ontario statutes No amendments proposed to the LTCHA or RHA

The Future: Bill 84 Excellent Care for All Act The fact that a person received MAiD cannot be invoked to deny a benefit or other sum provided under contract or statute e.g. life insurance benefits, WSIB survivor benefits, pension benefits No action or other proceeding for damages can be commenced against a physician or nurse practitioner or any other person assisting them for acts or omissions done in good faith relating to MAiD except an action or proceedings based in alleged negligence no immunity from civil action against health facilities

The Future: Bill 84 Workplace Safety & Insurance Act FIPPA & MFIPPA Amended to state that the cause of death of a person who receives MAiD will be the underlying illness or injury FIPPA & MFIPPA Acts do not apply to identifying information relating to MAiD Amendments would protect against access to information requests identifying clinicians and “facilities” providing MAiD Term “facility” not defined in Bill or existing legislation MFIPPA covers municipally-run LTC homes PHIPA continues to apply to homes

The Future: Bill 84 Coroners Act Where a person dies from MAiD, physician or NP who administered treatment must notify the coroner Must provide any information about the facts and circumstances relating to the death that Coroner considers necessary Any other person with knowledge of the death must provide such information on the request of the coroner Coroner will have discretion as to whether an investigation will ensue into the circumstances of death Based on the information provided Role of the coroner in MAiD to be reviewed by Minister of MCSCS within 2 years

The Future: Bill 84 Vital Statistics Act Amendments set requirements respecting coroner’s documentation of MAiD deaths Clarifies that coroner does not need to sign the medical certificate of death for MAiD deaths, unless the coroner investigates

Ontario’s Care Coordination Service Province is proposing to establish a Care Coordination Service to assist patients and caregivers in accessing additional information and services for MAiD and other end-of-life options Service would supplement the Clinician Referral Service MOH to share further information about CCS in early 2017

Outstanding Issues Amendments to the LTCHA and RHA in order to “fill-in the gaps” Conscientious objections to providing MAiD by faith-based homes Nurse practitioners prescribing narcotics Data and information gathering

Lisa Corrente Partner, Employment & Labour Group/Health Law Group 416 643 8800 lcorrente@torkinmanes.com