Improving the Last Stages of Life EXECUTIVE SUMMARY

Improvng the Last Stages of Lfe EXECUTIVE SUMMARY

ABOUT THE LAW COMMISSION OF ONTARIO The Law Commsson of Ontaro (LCO) was created by an Agreement among the Law Foundaton of Ontaro, the Ontaro Mnstry of the Attorney General, Osgoode Hall Law School and the Law Socety of Upper Canada, all of whom provde fundng for the LCO, and the Law Deans of Ontaro s law schools. York Unversty also provdes fundng and n-knd support. The LCO s stuated n the Ignat Kaneff Buldng, the home of Osgoode Hall Law School at York Unversty. The mandate of the LCO s to recommend law reform measures to enhance the legal system s relevance, effectveness and accessblty; mprove the admnstraton of justce through the clarfcaton and smplfcaton of the law; consder the use of technology to enhance access to justce; stmulate crtcal legal debate; and support scholarly research. The LCO s ndependent of government and selects projects that are of nterest to and reflectve of the dverse communtes n Ontaro. It has commtted to engage n mult-dscplnary research and analyss and make holstc recommendatons as well as to collaborate wth other bodes and consult wth affected groups and the publc more generally. LAW COMMISSION OF ONTARIO FINAL REPORTS Legal Capacty, Decson-makng and Guardanshp (March 2017) Smplfed Procedures for Small Estates (August 2015) Capacty and Legal Representaton for the Federal RDSP (June 2014) Revew of the Forestry Workers Len for Wages Act (September 2013) Increasng Access to Famly Justce Through Comprehensve Entry Ponts and Inclusvty (February 2013) Vulnerable Workers and Precarous Work (December 2012) A Framework for the Law as It Affects Persons wth Dsabltes: Advancng Substantve Equalty for Persons wth Dsabltes through Law, Polcy and Practce (September 2012) Currculum Modules n Ontaro Law Schools: A Framework for Teachng about Volence Aganst Women (August 2012) A Framework for the Law as It Affects Older Adults: Advancng Substantve Equalty for Older Persons through Law, Polcy and Practce (Aprl 2012) Modernzaton of the Provncal Offences Act (August 2011) Jont and Several Lablty Under the Ontaro Busness Corporatons Act (February 2011) Dvson of Pensons Upon Marrage Breakdown (December 2008) Fees for Cashng Government Cheques (November 2008) DISCLAIMER The opnons or ponts of vew expressed n our research, fndngs and recommendatons do not necessarly represent the vews of our funders, the Law Foundaton of Ontaro, the Mnstry of the Attorney General, Osgoode Hall Law School, and the Law Socety of Upper Canada, or of our supporters, the Law Deans of Ontaro, or of York Unversty. Law Commsson of Ontaro 2032 Ignat Kaneff Buldng, Osgoode Hall Law School, York Unversty 4700 Keele Street, Toronto, Ontaro, Canada M3J 1P3 Tel: (416) 650-8406 TTY: 1 877 650-8082 Fax: (416) 650-8418 General Emal: LawCommsson@lco-cdo.org www.lco-cdo.org LAW COMMISSION OF ONTARIO MAY 2017

Ths publcaton should be cted as follows: Law Commsson of Ontaro, Improvng the Last Stages of Lfe: Dscusson Paper (Toronto: May 2017) Support servces are avalable Readng and thnkng about the last stages of lfe can rase ssues related to gref, bereavement, anxety and personal crss. Ontaro s Mental Health Helplne s a free telephone servce avalable 24 hours a day, 7 days a week, to help you access a range of supports for copng wth gref and loss. If you need help, please call 1-866-531-2600 or vst http://www.mentalhealthhelplne.ca. Accessble formats Preparaton of ths document comples wth machne readable formats. To receve ths document n other accessble formats please call the Law Commsson of Ontaro toll free at 1-866-950-8406 or connect by emal at lawcommsson@lco-cdo.org. The followng ndvduals contrbuted to research or draftng of ths dscusson paper: Law Commsson of Ontaro staff: Sarah Mason-Case, Project Head (prmary author) Lauren Bates, Senor Lawyer Ryan Frtsch, Research Lawyer Nye Thomas, Executve Drector Ken Lung, Mnstry of the Attorney General Counsel n Resdence Student researchers: Pa Anthonymuttu, Unversty of Western Ontaro Ava Karbakhsh, Unversty of Ottawa Gregory Mles, Unversty of Maryland Adam Gancola, Osgoode Hall Law School Meghan Hum, Unversty of Ottawa Ern Estok, Lakehead Unversty A lst of the project Advsory Group members s located at Appendx C. LAW COMMISSION OF ONTARIO MAY 2017

TABLE OF CONTENTS 1. INTRODUCTION...................................................................................................... 1 A. Executve Summary.............................................................................................. 1 B. What s the Law Commsson of Ontaro s Project about?................................................ 1 C. What key questons do these consultatons rase?........................................................ 3 D. The project scope ncorporates ongong developments................................................ 7 E. The LCO s approach to law reform.......................................................................... 9 1. Our mandate and values.................................................................................... 9 2. Project development, research and consultatons.................................................... 10 F. How to Partcpate.............................................................................................. 13 ENDNOTES................................................................................................................ 14 LAW COMMISSION OF ONTARIO v MAY 2017

1. INTRODUCTION A. The Law Commsson of Ontaro The Law Commsson of Ontaro (LCO) s Ontaro s leadng law reform agency. Our role s to conduct research, undertake publc consultatons, and develop reports and recommendatons to mprove the effectveness, relevance and accessblty of the law. Our work promotes access to justce and contrbutes to publc debate. Over the last 10 years, LCO projects have studed and recommended law reform n areas as dverse as dsablty rghts, consumer protecton, and vulnerable workers. B. What s the Law Commsson of Ontaro s Project about? The Law Commsson of Ontaro s (LCO) project, Improvng the Last Stages of Lfe, consders how the law shapes the rghts, choces, and qualty of lfe for persons who are dyng and those who support them. The project seeks to address the experences of everyone nvolved n the dyng process, ncludng: ndvduals, caregvers and other famly and frends, health care nsttutons and professonals, government, other professonals, and communty organzatons. Our goal s to hear from these groups to better dentfy and recommend law reforms that are concrete, precse, and responsve to the experence of persons n the last stages of lfe. The purpose of LCO s dscusson paper s to encourage and facltate publc engagement on varous ssues affectng rghts and care n the last stages of lfe and to nvte you to partcpate n our project. In addton to ths paper, the LCO wll also be organzng consultaton meetngs, forums, focus groups and ndvdual ntervews across the provnce throughout the sprng and summer of 2017. For a schedule of publc consultatons and other nformaton about the LCO s Last Stages of Lfe Project, please vst our webste at http://www.lco-cdo.org/laststages Ths dscusson paper comes at a crtcal tme. Canadan law, polces and values about death and dyng are changng, and there s growng demand for compassonate care that supports a wde range of these values and expectatons. Death s an mmensely sgnfcant experence that each person faces as an ndvdual, famly member, frend and partcpant n broader communty networks. Many of us value death and the dyng process as a unquely meanngful stage n lfe and we approach t wth mxed sensbltes from confuson and gref to a sense of celebraton and release. The last stages of lfe s the broad and nclusve term we use n ths project to capture ths experence of dyng as a process or a contnuum of events, whether as a result of termnal llness, chronc condtons or serous fraltes that could progress untl the end of lfe. Some such persons may have lttle tme left to lve, whle others may transton through the dyng process for an extended perod of years. The LCO s defnton of last stages of lfe s unque. Our objectve n selectng ths term LAW COMMISSION OF ONTARIO 1 MAY 2017

s to dstngush the experence of persons who are dyng as a partcular stage n lfe from establshed models of care that may be benefcal durng the dyng process, most notably pallatve and end-of-lfe care. Terms such as last stages of lfe, care pallatve care, end-of-lfe and accompanment are defned n the Glossary at Appendx A The mportance of these ssues cannot be underestmated. The proporton of ndvduals enterng the last stages of lfe n Ontaro s expected to ncrease apprecably n the comng years as the baby boom generaton contnues to age. 1 Ontarans are also lvng longer as a result of medcal nnovatons that prolong lfe; however, we are lvng longer wth chronc llness and complex care needs. 2 Copng wth the growng demand for servces and supports affects hundreds of thousands of Ontarans; ther extended networks of famly, frends and caregvers; and countless nsttutons. Every Ontaran no matter what ther stage of lfe has an nterest n the dyng experence. The LCO s project stuates these concerns wth the last stages of lfe wthn Ontaro s legal framework and examnes the possbltes for reform. The need for a revew of legal frameworks at ths tme s clear. There are numerous laws and polces that requre updatng, clarfcaton and smplfcaton, and that currently nhbt access to just outcomes. The LCO s project asks questons about how to address these challenges, so that the law can facltate not hnder mprovements across the health, socal and legal sectors. Those n the last stages of lfe. A sgnfcant number of Ontarans, along wth ther famles, frends, and care gvers, face these ssues every year. Last year some 103,000 Ontarans ded. 3 Most people contnue to de n hosptal: over 41% of deaths took place at one of 155 publc or prvate hosptals n Ontaro. 4 Caregvers are also part of ths experence. Estmates are that some 35,000 persons a year acted as end-of-lfe caregvers n a prvate home or long-term care faclty. 5 Currently there are 78,500 persons who resde n one of Ontaro s 636 long-term care homes, whle another 26,000 are on wat lsts. 6 Canadans are also accessng medcal assstance n dyng n greater numbers. Estmates are of some 744 medcally asssted deaths across Canada snce legslaton came nto effect n 2016, of whch 180 took place n Ontaro. 7 The LCO has nterest and expertse n these ssues as Ontaro s leadng law reform agency. We provde ndependent, balanced, and authortatve advce on some of Ontaro s most complex and far-reachng legal polcy ssues. Our process evaluates laws mpartally, transparently and broadly. The LCO s work s nformed by legal analyss; multdscplnary research; publc consultatons; socal, demographc and economc condtons; and the mpact of technology. As part of ths process, the LCO s mndful of rapd and ongong federal and provncal ntatves actvely shapng the legal, regulatory and polcy frameworks governng the last stages of lfe. Ths project has evolved alongsde these developments. The key questons asked n ths paper have been refned to expand the scope of ntersectng ssues rather than duplcatng governmental ntatves, partcularly as they relate to two prncpal subjects: pallatve care and medcal assstance n dyng (MAID). 8 Ths paper smlarly draws on fndngs from several completed and ongong LCO projects, most notably reports regardng capacty and decson-makng, older adults, and persons wth dsabltes. Related ongong government ntatves and LCO projects are overvewed below, n sectons C and D. LAW COMMISSION OF ONTARIO 2 MAY 2017

For more nformaton on the LCO s Last States of Lfe Project Scope Statement, and for regular updates on the project, please vst our webste at http://www.lco-cdo.org/en/laststages To access reports and other documents from the LCO s past and ongong projects, please vst our webste at http://www.lco-cdo.org/ C. What key questons do these consultatons rase? The paper syntheszes the LCO s consderable research and background consultatons to date, and asks both general and specfc questons about key ssues. The ssues and questons dentfed n ths paper are nether fnal nor exhaustve. Partcpants are welcome to make submssons on any addtonal topcs they beleve are relevant to the project scope. A comprehensve lst of questons the LCO has posed n ths dscusson paper s lsted n Appendx G, Questons for Dscusson. The Importance of Care n the Last Stages of Lfe (chapter 2): One consequence of the LCO s nclusve approach to defnng care n the last stages of lfe s that we must account for dversty n Ontaro s communtes and regulatory frameworks. The project seeks to address the experences of everyone nvolved n the dyng process, ncludng: ndvduals, caregvers and other famly and frends, health care nsttutons and professonals, government, other professonals. It also means consderng how the qualty of care n the last stages of lfe vares consderably across dfferent communtes of need, whch may be defned by age, dsablty, LGBTQ dentty, Indgenous dentty, ncome level, place of resdence and homelessness, mental health, fath, culture and others. The LCO has made efforts to explore how dversty nfluences the ssues under consderaton n the project. Ths nclusve approach also means keepng up-to-date wth dynamc and ongong legslatve developments affectng the last stages of lfe. 1. Wthn the scope of LCO s project, are there any addtonal affected ndvduals, communtes, and nsttutons that should be taken nto account? 2. Are there any addtonal recent debates or legslatve frameworks that LCO should be aware of? The Law and Care n the Last Stages of Lfe (chapter 3): Ths chapter summarzes exstng laws whch ntersect wth the last stages of lfe. The chapter demonstrates how a wde array of fundamental legal rghts and prncples affect the delvery of health care. There are also lmts on the law, as well as dfferent legal tradtons n Canada ncludng Indgenous legal tradtons and relgous laws. These also mpact on professonal standards, where there are competng vews about the potental conflct between legal LAW COMMISSION OF ONTARIO 3 MAY 2017

and medcal conceptons about rghts and care. Ths s an mportant queston for ths project, and llustrates how law reform s relevant to what may be perceved as medcal, admnstratve or publc polcy ssues n the last stages of lfe. 3. What legal rghts and prncples are mportant for shapng care and establshng professonal standards n the last stages of lfe? Ontaro s Laws, Polces and Programs (chapter 4): Laws, polces and programs create a framework defnng several core aspects of the last stages of lfe n Ontaro: the approach to and delvery of pallatve care servces; health-care decson makng, plannng, and substtute consent; medcal assstance n dyng; and resolvng health care dsputes. A consderable amount of dscusson s takng place around key controverses n these areas, ncludng a publc health approach to pallatve care, access to pallatve care, and access to medcal assstance n dyng. In addton to these there are other laws whch also ntersect wth medcal assstance n dyng, rasng ssues related to capacty assessments, transtons n care, employment concerns, caregver benefts, nsurance coverage, and rghts n long-term care and retrement homes. 4. Legslaton governng health care, housng, employment, professons, and other areas ntersects wth the last stages of lfe what gaps exst that would beneft from greater certanty or clarty? 5. Should a publc health approach to pallatve care be ntegrated nto Ontaro s regulatory framework, and how would t look on the ground? 6. The LCO has dentfed several areas where medcal assstance n dyng could be clarfed, ncludng transtons n care, conscentous objecton, and appeals of capacty determnatons. Are there other addtonal ssues to consder? Access to Justce for Communtes wth Unmet Needs (chapter 5): Recent government revews of pallatve care confrm that Ontarans suffer marked dspartes n accessng qualty care n the last stages of lfe. LCO has partcularly dentfed unmet needs respectng dfferent communtes. These nclude caregvers and other famles and frends; persons lvng n long-term care and retrement homes; Frst Natons, Inut and Méts people; persons experencng homelessness; persons wth dsabltes; and fath and culturally dverse communtes. There are varous strateges, controverses, optons, and choces n terms of accommodatng these dverse communtes. LAW COMMISSION OF ONTARIO 4 MAY 2017

7. What are your experences as a member or supporter of a communty of need gong through the last stages of lfe? 8. What law reforms do you beleve are needed for communtes wth unmet needs, and how would such reforms be most effectvely mplemented n law? 9. Are there any communtes wth unmet needs who are not dentfed n ths paper that the LCO should consder? Specfc Challenges to Accessng Care n the Last Stages of Lfe (chapter 6): Ths chapter consders ssues related to autonomy, self-determnaton, benefcence (and malefcence) n care, and safeguards aganst abuse. These arse n several specfc contexts, ncludng the legal framework for, and publc understandng of, consent and advance care plannng; decson-makng authorty over lfe-sustanng practces, ncludng wthdrawal and wthholdng of treatment, CPR, and nutrton; pallatve sedaton therapy; managng planned deaths at home; the experence of supportng professonals; and accommodaton and supports for fath and cultural communtes. Unclear legal regulaton of these ssues leads to uncertanty and conflct, but must also contend wth dffcult controverses related to who has decson makng authorty n crtcal stuatons. 10. How can nsttutons, professonals and the publc be better supported to obtan meanngful and legally complant health care consent? 11. How can practce tools acheve the goal of provdng accurate, consstent and meanngful nformaton about consent and advance care plannng? 12. There are connectng laws, prncples and polces regardng decson makng for lfe-sustanng practces such as CPR, DN, and nutrton. What are the strengths, weaknesses and gaps n Ontaro s current legal framework for decson-makng authorty over lfe-sustanng practces? 13. Who should have authorty to determne whether lfe-sustanng and lfesavng treatment (e.g., CPR, DNR) s offered to, or wthdrawn from, a patent the patent (or SDM) or a health care provder? Under what crcumstances? 14. Should Ontaro regulate the offerng of food and water to persons nearng the end of lfe, ncludng the authorty of SDMs to consent to wthholdng necesstes of lfe? LAW COMMISSION OF ONTARIO 5 MAY 2017

15. Should Ontaro regulate the clarty, consstency and safety of pallatve sedaton therapy consderng the ethcal challenges, medcal assstance n dyng, and the need for safeguards lke nformed consent? 16. Whch optons are preferred to better plan for and manage expected deaths at home? Would t be benefcal to have a provnce-wde strategy or formal regulaton? 17. How can strateges for addressng the needs of health care provders assst wth mental and moral stress? How can health care practtoners be better prepared to manage dsputes? 18. Do legal professonals requre specfc educaton and gudance on matters relatng to the last stages of lfe, and what form mght ths best take? 19. What approaches are best suted to address barrers, accommodatons and supports to better ntegrate fath, cultural and sprtual practces nto care nearng the end of lfe? Assstance wth the Law: Navgaton, Dspute Resoluton and Publc Legal Educaton (chapter 7): The llness trajectory for each person s unque t may be long or bref, stable or fluctuatng. Care may be provded to persons n ther own homes through comuntybased servces; long-term care and retrement homes; hosptal departments; and n resdental hospces. However, many Ontarans experence problematc transtons and may face barrers to accessng servces lke medcal assstance n dyng. It can also be unclear and confusng where to turn when dsputes arse. 20. What are your experences as a patent or caregver transtonng between care settngs n the last stages of lfe? 21. Are law reform measures needed to mprove access, navgatonal supports, and the coordnaton of care wthn the health care system? 22. What strateges, processes, or nsttutons are best suted to resolvng dsputes n the last stages of lfe? 23. How can legal nformaton or educaton about the law be made more relevant, tmely, and effectve n the last stages of lfe? LAW COMMISSION OF ONTARIO 6 MAY 2017

D. The project scope ncorporates ongong developments Ths project was ntated followng a request from the Regstered Nurses Assocaton of Ontaro (RNAO) that the LCO study medcal assstance n dyng n Ontaro. The LCO Board of Governors approved the project n 2014, pror to the Supreme Court of Canada s decson n Carter v. Canada (Attorney General), whch found certan Crmnal Code provsons prohbtng physcan-asssted dyng to be unconsttutonal. 10 Snce the release of the Supreme Court s decson, the federal and provncal governments have taken measures to delneate the avalablty of medcal assstance n dyng, the procedural requrements for ts delvery, and the respectve rghts and responsbltes of varous partes. Parlament amended the Crmnal Code to defne elgblty crtera and protect those nvolved n the practce n specfc crcumstances. 11 At the provncal level, the Ontaro government ntroduced measures to clarfy how medcal assstance n dyng s to be delvered n practce as well as the process for conscentously objectng provders to make effectve referrals, among other measures. Regulatory health colleges have also publshed gudance for ther members. (More nformaton on the legal framework for medcal assstance n dyng s found n chapter 4, Ontaro s Laws, Polces and Programs.) Furthermore, after the LCO s project began, the Ontaro Government made a number of publc commtments to support a comprehensve strategy on pallatve care. 12 One of these commtments ncluded the launch of a provncal network called the Ontaro Pallatve Care Network (OPCN). The OPCN brngs together a broad range of partners, to drve mplementaton of consstent qualty hospce pallatve care across the provnce. 13 The LCO s aware that the OPCN wll be addressng systemc barrers relatng to Ontaro s decentralzed nsttutonal framework whch may go a long way n brdgng dspartes n access. In addton to these non legslatve measures, on May 10, 2017, the government of Ontaro passed Bll 84, the Medcal Assstance n Dyng Statute Law Amendment Act, 2016. 14 Bll 84 algns wth the federal MAID legslaton (Bll C 14, An Act to amend the Crmnal Code and to make related amendments to other Acts (medcal assstance n dyng)), to address areas relevant to MAID that fall under provncal jursdcton. Throughout our plannng for ths project, the LCO has sought to be senstve to government actvtes n these two areas, whch materalzed after our own project was approved. The LCO strves to prevent overlap between our work and contemporaneous ntatves n all of our projects. However, avodng overlap s dstnctly mportant n ths nstance because the federal and provncal governments plannng s evolvng and n a state of development. The LCO wll, however, address ssues and brdge gaps that complement these ntatves and nform ther development from a legal perspectve. For greater clarty, the followng determnatons have been made regardng LCO s scope for ths project: The LCO wll not address matters of clncal practce. Durng background consultatons we asked stakeholders about lmtatons on the LCO s project. We were advsed not to address matters of clncal practce, and we agree. The LCO vews the analyss of health care provders scope of practce as fallng outsde our mandate as a law reform agency. LAW COMMISSION OF ONTARIO 7 MAY 2017

The LCO s defnton of last stages of lfe s unque; t dstngushes the experence of persons who are dyng as a partcular stage n lfe from establshed models of care that may benefcal durng the dyng process, most notably pallatve and end-of-lfe care. Smlarly, our defnton of care s broad; t encompasses varous servces and supports that could be provded durng the last stages of lfe, ncludng medcal treatments (and offerng, wthdrawng and wthholdng such treatment); accompanments (e.g., psychlogcal, socal and sprtual counsellng); and daly lvng assstance (e.g., bathng, cookng and dressng). The defnton of care used n ths document recognzes servce and supports for caregvers, famly and frends, such as respte and bereavement counsellng. It s also closely connected to legal assstance and navgatonal supports that may ndrectly affect access to care. It does not nclude matters of clncal practce. LCO wll not address challenges n educaton for medcal and legal professonals. Durng background consultatons the LCO receved many comments from members of the publc about several challenges that health care provders face n provdng pallatve care. The foremost challenges that were dentfed were the lack of moral supports for psychologcal dstress, lack of clncal educaton (for prmary and specalty care provders), and the desrablty of expandng aspects of regstered nurses scope of practce to ncrease accessbly to a range of servces (e.g., medcatons, death certfcatons, treatments). Of these ssues, the LCO s project wll only address health care provders employmentrelated psychologcal supports for a number of reasons. Frst, as above, the LCO wll not address matters of clncal practce. Second, the LCO does not wsh to duplcate ongong efforts of the Mnstry of Health and Long-Term Care and the OPCN to strengthen educaton for health care provders. Legal professonals also face a varety of challenges when t comes to advsng clents who are dyng and those around them. Smlar to our approach to health care provders, ths project does not consder challenges wth educaton for legal professonals on decsonmakng ssues due to our work on that subject n the Legal Capacty, Decson-Makng and Guardanshp project (see secton D, below). For our dscusson about the challenges legal and medcal professons face n provdng pallatve care and servces see chapter 6.F, Understandng the experences of supportng professonals. The LCO wll not duplcate federal and provncal work on medcal assstance n dyng. The actons taken, ntatves proposed, and measures ntroduced by the federal and provncal governments to date were further clarfed n December 2016. Ontaro s ntroducton of Bll 84 addressed several amendments to the Coroner s Act, Vtal Statstcs Act, Excellent Care for All Act, Muncpal / Freedom of Informaton and Protecton of Prvacy Act, and the Workplace Safety and Insurance Act. Addtonally, the federal government announced that the Councl of Canadan Academes wll conduct ndependent revews of medcal assstance n dyng requests relatng to requests by mature mnors, to advance requests, and to requests where mental llness s the sole underlyng medcal condton. LAW COMMISSION OF ONTARIO 8 MAY 2017

These efforts greatly clarfy whch ssues the LCO should address n ths project as complmentary to or beyond the scope of these government ntatves, and wthout repeatng those ntatves. For more nformaton on medcal assstance n dyng and pallatve care n Ontaro, see chapter 2.B, Recent Polcy Debates about Rghts Nearng the End of Lfe and chapter 4.E, Medcal assstance n dyng. The LCO wll rely on fndngs from past and ongong projects. Ths dscusson paper draws on fndngs from several of the LCO s past and ongong projects, the most notable of whch are explaned below n secton D. Key ssues revewed n these earler projects nclude recommendatons regardng laws n Ontaro on nformed consent, advance care plannng and substtute decson-makng; professonal educaton and rules of professonal conduct; and formal dspute resoluton mechansms, partcularly the Consent and Capacty Board. E. The LCO s approach to law reform 1. Our mandate and values The LCO s Ontaro s leadng law reform agency. The core of our mandate s fosterng access to justce, whch we am to acheve by undertakng rgorous research and analyss, dssemnatng reports and engagng n crtcal debate, among other actvtes. The LCO recognzes that [a] more comprehensve understandng of access to justce goes beyond the legal system to encompass efforts to assess and respond to ways n whch law mpedes or promotes economc or socal justce. 15 LCO reports nclude prncpled, practcal, problem-solvng recommendatons nformed by broad consultatons and tested through a transparent, comprehensve revew process that engages a broad range of ndvduals, experts, and nsttutons. The LCO gves a voce to margnalzed communtes and others who should have an mportant role n law reform debates and dscussons. The LCO has developed a comprehensve project development, research and consultaton strategy to organze our work. Ths strategy ensures that the LCO s projects are transparent and partcpatory. LCO projects are delvered n several phases that are typcally concentrated around the release of three core documents: a dscusson paper, nterm report and fnal report. Below we descrbe the research and consultatons we have conducted to date n preparng ths dscusson paper. LAW COMMISSION OF ONTARIO 9 MAY 2017

2. Project development, research and consultatons a. Prelmnary Research and Consultatons The dscusson paper was drafted followng consderable research and consultatons begnnng n Aprl 2015. Prelmnary research nvolved an envronmental scan of lterature n dscplnes ncludng law, medcne and the socal scences as well as a revew of government and other polcy documents. Our prelmnary consultatons conssted of nearly 70 sem-structured ntervews wth ndvduals and organzatons, representng wde-rangng perspectves. We consulted an addtonal 35 partcpants n a large stakeholder event (see below), rasng our prelmnary consultatons to over 100 ndvduals and organzatons. The ssues addressed n ths paper are grounded n our consultaton results as well as our ntal research. A lst of ndvduals and organzatons we have consulted s found at Appendx B Ths dscusson paper also draws on fndngs from several of the LCO s past and ongong projects. Most notably, t reles on LCO reports regardng capacty and decson-makng, older adults and persons wth dsabltes: Legal Capacty, Decson-Makng and Guardanshp: Snce the end of 2012, the LCO has led a law reform project that comprehensvely revews and assesses Ontaro s regulatory fram work for legal capacty and decson-makng. It examnes three nterlockng statutes: the Substtute Decsons Act, 1992 (SDA), the Health Care Consent Act, 1996 (HCCA) and certan provsons n the Mental Health Act. 16 In March 2016, we released an Interm Report wth draft recommendatons. 17 The fnal report was released n March 2017, and s avalable onlne at http://www.lco-cdo.org/en/capacty-guardanshp A Framework for the Law as t Affects Older Adults: Ths project defnes a set of prncples to gude the evaluaton and development of laws, polces and programs n order to take nto account the experences of older adults, and to promote postve outcomes for older adults as full members of socety. 18 The fnal report was released n Aprl 2012, and s avalable onlne at http://www.lco-cdo.org/en/content/older-adults A Framework for the Law as t Affects Persons wth Dsabltes: Ths project defnes a set of prncples to gude the evaluaton and development of laws, polces and programs n order to take nto account the experences of persons wth dsabltes, and to promote postve outcomes for persons wth dsabltes as full members of socety. 19 LAW COMMISSION OF ONTARIO 10 MAY 2017

The fnal report was released n September 2012, and s avalable onlne at http://www.lco-cdo.org/en/content/persons-dsabltes These projects are relevant to many of the ndvduals and communtes affected by ths current project. For example, the LCO s Framework projects address the communtes of older adults and persons wth dsabltes, both of whom are unquely affected by care n the last stages of lfe. The Framework projects also recognze the mportance of autonomy, dgnty and securty as well as the need to balance tensons between these prncples. Tensons between these prncples underpn current debates on rghts to pallatve care and medcal assstance n dyng to menton but a few ssues ths dscusson paper examnes. Addtonally, the LCO s Frameworks are consstent wth other prncples-based frameworks and statements beng produced by the courts, government agences, professonal assocatons and research nsttutes on rghts nearng the end of lfe. 20 Ths project s also related to the LCO s recently completed Legal Capacty, Decson-Makng and Guardanshp project. The capacty and decson-makng project has developed recommendatons regardng laws n Ontaro on nformed consent, advance care plannng and substtute decson-makng, whch are all relevant to the last stages of lfe. Accordngly, ths paper does not repeat our research and analyss n the LCO s capacty and decson-makng project; nstead, t reles on fndngs n that project, where approprate. To access reports and other documents from the LCO s past and ongong projects, please vst our webste at http://www.lco-cdo.org/ b. Advsory Group In September 2015, the LCO formed an Advsory Group for the project. The purpose of the Advsory Group s to provde the LCO wth advce throughout the project. Advsory Group members nclude representatves of the Mnstry of the Attorney General (MAG), MOHLTC, academcs, boethcsts, physcans, nurses, personal support workers, psychologsts, trusts and estates lawyers, legal clncs, professonal assocatons, resdental and vstng hospces, and advocacy organzatons. A number of the Advsory Group members are respected specalsts n pallatve and end-of-lfe care and n legal frameworks relevant to death and dyng. The Advsory Group gave the LCO helpful nput nto the structure and content of our documents, begnnng wth the project scope released n January 2016. It then revewed ths dscusson paper and provded the LCO wth sgnfcant feedback. We are ncredbly grateful for the Advsory Group members nvaluable observatons and commtment. A lst of Advsory Group members s provded at Appendx C LAW COMMISSION OF ONTARIO 11 MAY 2017

c. Commssoned Research Papers The LCO benefted from seven research papers that we commssoned from multdscplnary teams especally for ths project and from research papers prevously completed for our Legal Capacty, Decson-Makng and Guardanshp project. These papers are avalable publcly at www.lco-cdo-org. The authors fndngs and suggestons have been taken nto account n our analyss to date, although the vews expressed n them do not necessarly reflect the vews of the LCO. These commssoned papers are as follows. 1. Judth Wahl (Advocacy Centre for the Elderly), Mary Jane Dykeman (Dykeman Dewhrst O'Bren LLP) & Tara Walton: Informed consent, advance care plannng and substtute decson-makng: usng practce tools to ensure meanngful decson-makng n the last stages of lfe 2. Dr. Donna Wlson & Dr. Stephen Brch: Improved care settng transtons n the last year of lfe 3. Dr. Mary Chu, Dr. Adran Grek, Sona Meera, LJ Nelles, Dr. Joel Sadavoy & Dr. Vrgna Wesson: Understandng the lved experence of ndvduals, caregvers and famles touched by fralty, chronc llness and dementa n Ontaro 4. Omar Ha-Redeye, Ruby Latf & Dr. Kashf Przada: Integratng relgous and cultural supports nto qualty care n the last stages of lfe n Ontaro 5. Susan Brown, Dr. James Downar, Dr. Jennfer Gbson, Dr. Laura Hawryluck, Dr. Cslla Kalosca, Dr. Joy Rchards, Robert Sbbald & Alex Wood: Balancng the nterests of patents, substtute decson-makers, famly and health care provders n decson-makng over the wthdrawal and wthholdng of lfe-sustanng treatment 6. Dr. Arne Stnchcombe, Dr. Katherne Kortes-Mller & Dr. Kmberley Wlson: Perspectves on the fnal stage of lfe from LGBT elders lvng n Ontaro 7. Sandy Buchman, Rosaro Cartagena, Rose Gest, Mark Handelman, Kaveh Kateban, Wendy Lawrence, Trudo Lemmens, Harvey Schpper, Glbert Sharpe & Alson Thompson: The mpact of sufferng on decson-makng and methods of assessng capacty n the last stages of lfe Addtonal nformaton about research papers commssoned for the LCO s project are lsted n Appendx D. The papers are avalable onlne at http://www.lco-cdo.org/en/last-stages-of-lfe d. Roundtable on Legal Ethcs and Practce for the Last Stages of Lfe The LCO co-hosted the Roundtable on Legal Ethcs and Practce for the Last Stages of Lfe wth our valued partners lsted n Appendx E. Ths consultaton brought together about 35 legal experts to dscuss common challenges the professon faces and optons for reform. Partcpants ncluded academcs, government lawyers, and members of the judcary, the Law Socety of Upper Canada, regulatory health colleges, and the trusts and estates bar. Informaton from the sesson was ncorporated nto ths dscusson paper. Further nformaton on the Roundtable on Legal Ethcs and Practce for the Last Stages of Lfe can be accessed through our project webpage at http://www.lco-cdo.org/en/last-stages-of-lfe LAW COMMISSION OF ONTARIO 12 MAY 2017

F. How to Partcpate The LCO s approach to law reform s drven by publc consultaton. We take a multdscplnary approach to research that nvolves the partcpaton of ndvduals, communtes and nsttutons across the provnce. Learnng about your experences and opnons s crtcal to our analyss of optons for law reform. The full Dscusson Paper s the frst step n facltatng ths engagement. The paper s desgned to explan the project s scope, outlne the LCO s methodology, dentfy key ssues and provde nformaton on how the publc can partcpate n the project. We ve also summarzed other ssues n a Consultaton Issues Map and Issue Backgrounders, avalable on our webste. LCO s formal consultaton perod runs from May September 2017. The LCO nvtes your partcpaton through: The project webste at http://www.lco-cdo.org/laststages Wrtten submssons at any tme to lawcommsson@lco-cdo.org Watch lve and archved webcast consultaton sessons Complete the consultaton survey on your moble, tablet, or computer Propose an n-person focus group for your communty Contactng Project Research Lawyer Ryan Frtsch through the contact nformaton below Send your comments to: Law Commsson of Ontaro Toronto (416) 650-8406 Project on Improvng the Last Stages of Lfe Toll-Free (866) 950-8406 2032 Ignat Kaneff Buldng TTY (416) 650-8082 Osgoode Hall Law School, York Unversty Fax (416) 650-8418 4700 Keele Street, Toronto, ON M3J 1P3 E-mal: lawcommsson@lco-cdo.org Wrtten submssons wll be accepted untl September 29, 2017 LAW COMMISSION OF ONTARIO 13 MAY 2017

ENDNOTES 1. See for example: Pallatve Care n Audtor General of Ontaro, Annual Report 2014 (Toronto: Queen s Prnter for Ontaro, 2014), 260 [AG 2014], whch reports that: People aged 85 and over consttuted the fastest-growng segment of Ontaro s populaton between 2006 and 2011, wth ther number ncreasng by 29% over that perod. The number of people aged 65 and over s expected to more than double from 2 mllon n 2012, when baby boomers began to turn 65, to over 4 mllon by 2036, when senors wll consttute 24% of Ontaro s populaton. 2. See for example: Allson Wllams, Mary Lou Kelley, Sarah Dykeman & Lly DeMglo, A Tmelne of Hospce Pallatve Care Polcy and Practce n Ontaro, Canada (Canadan Insttute of Health Research, February 2010), 3 [Wllams]; Francos-Perre Gauvn, Jula Abelson, John N. Lavs, Ctzen Bref: Improvng Access to Pallatve Care n Ontaro (Hamlton, Canada: McMaster Health Forum, 16 November 2013), 2 [Gauvn]. 3. Statstcs Canada, Deaths, estmates, by provnce and terrtory, 2011/12 2015/16, onlne: http://www.statcan.gc.ca/tables-tableaux/sum-som/l01/cst01/demo07a-eng.htm (last accessed January 13, 2017). 4. Ontaro Mnstry of Health and Long-term Care, Hosptals: Questons and Answers, onlne: http://www.health.gov.on.ca/en/common/system/servces/hosp/faq.aspx#hosptals (last accessed January 13, 2017). The propoton of Ontaran s dyng n hosptal s found n Donna Wlson & Steven Brch, Improvng End-of- Lfe Care Settng Transtons: A Mxed-Method Research Report (report commssoned by the Law Commsson of Ontaro, 2016), 31 [Wlson & Brch]. 5. S Badoobonso, Effect of Supportve Interventons on Informal Caregvers of People at the End of Lfe: A Rapd Revew (Toronto: Health Qualty Ontaro, 2014) [Badoobonso], 7. 6. Ontaro Long-term Care Assocaton, Sector Dashboard Ontaro (updated October 2016), onlne: http://www.oltca.com/oltca/documents/sector%20dashboards/ontaro_dashboard_1016.pdf (last accessed January 13, 2017). 7. CTV News, At least 744 asssted-deaths n Canada snce law passed: CTV News analyss (December 28, 2016), onlne: http://www.ctvnews.ca/health/at-least-744-asssted-deaths-n-canada-snce-law-passed-ctv-news-analyss-1.3220382 (last accessed January 13, 2017). 8. Law Commsson of Ontaro, Improvng the Last Stages of Lfe: Project Scope Statement, onlne: http://www.lco-cdo.org/en/last-stages-of-lfe-project-scope (last accessed 25 July 2016). 9. On the adequacy of pallatve care n Ontaro, see AG 2014, note 1, ch. 3. There are also centres of excellence n Ontaro and many ntatves that are ongong to strengthen pallatve care as dscussed later n ths dscusson paper. On centres of excellence, see: Canadan Medcal Assocaton, Pallatve Care: Canadan Medcal Assocaton s Natonal Call to Acton (May 2015), onlne: https://www.cma.ca/assets/assetslbrary/document/en/advocacy/pallatve-care-report-onlne-e.pdf (last accessed March 21, 2017). For nformaton on ongong ntatves n Ontaro, see chapter 4, Ontaro s Laws Polces and Programs. 10. Carter v. Canada (Attorney General), [2015] 1 SCR 331 [Carter]. 11. Parlament of Canada, Bll C-14, An Act to Amend the Crmnal Code and to Make Related Amendments to Other Acts (Medcal Assstance n Dyng), 1st Sess., 42nd Parlament, 2015-2016 (assented to June 16, 2016) [Bll C-14], onlne: http://www.parl.gc.ca/legsinfo/blldetals.aspx?language=e&mode=1&bllid=8177165 (last accessed 25 July 2016). 12. Government of Ontaro, Provnce Strengthens End-of-Lfe Care wth $75 Mllon Investment [Ontaro 2016], onlne: https://news.ontaro.ca/mohltc/en/2016/03/provnce-strengthens-end-of-lfe-care-wth-75-mllonnvestment.html (last accessed 25 July 2016). 13. Ontaro 2016, note 12. See also Cancer Care Ontaro, The Ontaro Pallatve Care Network, onlne: https://www.cancercare.on.ca/pcs/pallatve/opcn/ (last accessed 25 July 2016). 14. Government of Ontaro, Bll 84, Medcal Assstance n Dyng Statute Law Amendment Act, 2017, 2 nd Sess., 41 st Parlament, 2016-2017 (frst readng December 7, 2016), onlne: http://www.ontla.on.ca/web/blls/blls_detal.do?locale=en&bllid=4460&detalpage=blls_detal_status (last accessed March 13, 2017). 15. Law Commsson of Ontaro, Increasng Access to Famly Justce through Comprehensve Entry Ponts and Inclusvty (Toronto: February 2013), 15, onlne: http://www.lco-cdo.org/famly-law-reform-fnal-report.pdf (last accessed 25 July 2016). LAW COMMISSION OF ONTARIO 14 MAY 2017

16. Health Care Consent Act, 1996, S.O. 1996, c.2 [HCCA]; Substtute Decsons Act, 1992, S.O. 1992, c.30 [SDA]; Mental Health Act, R.S.O. 1990, Ch. M.7 [MHA]. 17. Law Commsson of Ontaro, Legal Capacty, Decson-makng and Guardanshp: Interm Report (Toronto: Law Commsson of Ontaro, October 2015), onlne: http://lco-cdo.org/en/capacty-guardanshp-nterm-report (last accessed 25 July 2016). 18. Law Commsson of Ontaro, A Framework for the Law as It Affects Older Adults: Advancng Substantve Equalty for Older Persons through Law, Polcy and Practce (Toronto: Aprl 2012), onlne: http://lco-cdo.org/en/content/older-adults (last accessed 25 July 2016). 19. Law Commsson of Ontaro, A Framework for the Law as It Affects Persons wth Dsabltes: Advancng Substantve Equalty for Older Persons through Law, Polcy and Practce (Toronto: Aprl 2012), onlne: http://lco-cdo.org/en/content/persons-dsabltes (last accessed: 25 July 2016). 20. See for nstance: Nada Incardona, Sally Bean, Kevn Reel & Frank Wagner, An Ethcs-based Analyss and Recommendatons for Implementng Physcan-Asssted Dyng n Canada (Toronto: Jont Centre for Boethcs, Unversty of Toronto, 2016); Cuthbertson v. Rasoul, [2013] 3 SCR 341 [Rasoul]; Carter, note 10; Canadan Medcal Assocaton, Prncples-based Recommendatons for a Canadan Approach to Asssted Dyng (January 2016), onlne: https://www.cma.ca/assets/assets-lbrary/document/en/advocacy/cma-framework_asssted-dyng_fnaljan2016-edted-20160412.pdf (last accessed 25 July 2016); Canadan Hospce Pallatve Care Assocaton, Qualty End-of-Lfe Care Coalton of Canada & Government of Canada, The Way Forward: A Roadmap for an Integrated Pallatve Approach to Care (March 2015), 13 [The Way Forward]. LAW COMMISSION OF ONTARIO 15 MAY 2017

Law Commsson of Ontaro 2032 Ignat Kaneff Buldng Osgoode Hall Law School, York Unversty 4700 Keele Street Toronto, Ontaro, Canada M3J 1P3 Web: www.lco-cdo.org/laststages E-mal: LawCommsson@lco-cdo.org Follow us on Twtter @LCO_CDO Tel: (416) 650-8406 Toll-Free: 1 (866) 950-8406 TTY: (416) 650-8082