CMA End-of-Life report

8/12/2019 CMA End-of-Life report

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JUNE 2014


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EXECUTIVE SUMMARYIn the rst half of 2014, the CanadianMedical Association (CMA) in partnershipwith Macleans magazine hosted a series oftown hall meetings in all regions of Canadafor the public on end-of-life care issues.

The national dialogue focused onthree main issues: advance care direc-tives, palliative care, and euthanasia andphysician-assisted dying. The main aimof the consultation process was to seekinput from Canadians on their perceptionsand views about the status of end-of-life

care in Canada. However, an importantsecondary purpose was to provide commondenitions and terminology as part of aninformed discussion on end-of-life careissues and to broadly inform the publicabout the current legal and legislative situ-ation in Canada and abroad.

The national dialogue was launchedin response to a need for leadership infostering a societal discussion aroundend-of-life care issues. As validated in thetown halls, the CMA was well positioned

to provide the needed leadership in raisingawareness about these issues.Town halls were held in St. Johns, NL (Feb.

20), Vancouver, BC (Mar. 24), Whitehorse,Yukon (Apr. 16), Regina, Sask. (May 7), andMississauga, Ont. (May 27). A live web chatwas also held on May 12 on the Macleans website. Members of the public were alsoable to post their comments online duringand after each town hall.

The town hall meetings were moder-ated by senior Macleans editorial staffand conducted under the guidance ofDr. Jeff Blackmer, the CMAs executivedirector of ethics, professionalism andinternational affairs. Each meeting fol-lowed the same format, with discussionsabout the terminology of end-of-life carefollowed by questions to the audience anddiscussions about advance care planningand directives, palliative care, and eutha-nasia and physician-assisted dying.

While it was clear that members of the

public often had diametrically opposedviews on the controversial topic ofeuthanasia and physician-assisted dying,common ground was evident on manyother important issues ranging from theimportance of advance care directives tothe need for a comprehensive palliativecare strategy in Canada.

The aim of the national dialogueprocess was to further inform themedical profession on the views of thepublic on this societal issue.*A number

of important conclusions and calls foraction can be made as a result of theconsultation process:

All Canadians should discuss end-of-life wishes with their families or otherloved ones.

All Canadians should prepare advancecare directives that are appropriate andbinding for the jurisdiction in whichthey live.

A national palliative care strategyshould be developed.

All Canadians should have access toappropriate palliative care services andmany dont.

More education about palliative careapproaches and services as well asabout how to initiate discussions aboutadvance care planning is required formedical students, residents and practis-ing physicians.

The Canadian public is divided onwhether the current Canadian ban on

euthanasia and physician-assisted dyingshould be maintained or not.

If the law in Canada is changed to alloweuthanasia or physician-assisted dying,strict protocols and safeguards are re-quired to protect vulnerable individualsand populations.

The content from this report and inputfrom a parallel consultation process con-ducted with CMA members will form thebasis for CMA advocacy activities on these

issues and future policy development.

* There were no consultations in Quebec becausea government-led public consultation hadalready been held in the province.(http://www.assnat.qc.ca/fr/travaux-parlementaires/commissions/CSMD/mandats/Mandat-12989/index.html)


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2 CANADIAN MEDICAL ASSOCIATION

A national dialogue

We need to hear more fromCanadians about how theirhealth care system can ensurenot only a long, healthy lifebut also a good death.

Dr. Louis Hugo Francescutti,CMA President, St. Johns

This national dialogue focused on three

main issues: advance care planning anddirectives, palliative care, and euthanasiaand physician-assisted dying. One aim ofthis dialogue was to provide clarity for thepublic on the often-complex terminologysurrounding end-of-life care issues and tobroadly educate them about the currentsituation in Canada and abroad. However,the main aim of the meetings was to seekinput from Canadians on their perceptionsand views about these topics.

The consultation was launched by

the CMA to provide Canadians with theopportunity to have a societal discussionon this issue as well as in response toa series of legal, legislative and societalfactors that are stimulating a re-evalua-tion of the current Canadian landscapearound end-of-life care. The dialogue wasorganized and conducted by the CMA atthe direction of the associations Boardof Directors, who felt the CMA was well

positioned to provide the needed leader-

ship and direction in launching a dialogueabout these serious issues.

Town halls were held in St. Johns, NL(Feb. 20), Vancouver, BC (Mar. 24), White-horse, Yukon (Apr. 16), Regina, Sask. (May7), and Mississauga, Ont. (May 27). Allevents were live streamed and Canadi-ans from all regions were able to providecomments online. A live web chat was alsoheld on May 12 on the Macleans website.Participation at the meetings oftenexceeded 100 people, with more than 225

attending the session in Vancouver. Mosttown halls were also actively discussed onTwitter using the hashtag #eolCdn.

The town hall meetings were moder-ated by senior Macleans editorial staffand conducted under the guidance ofDr. Jeff Blackmer, the CMAs executivedirector of ethics, professionalism andinternational affairs. Each meeting fea-tured a panel consisting of Dr. Blackmer

as well as local palliative care physiciansand patient representatives, and a seriesof videos designed to frame the discussionwere also presented. The same format wasused at each meeting: the panel discussedthe terminology of end-of-life care andthen questions (see page 3) were posed

to the audience and discussions were heldabout advance care planning and direc-tives, palliative care, and euthanasia andphysician-assisted dying. The live webchat was led by CMA President Dr. LouisHugo Francescutti, who also providedintroductory and concluding remarks ateach of the town hall meetings. Despitethe often-emotional nature of the sub- ject matter and the diversity of viewsexpressed, all meetings were conductedwith decorum, with participants respect-

ing opposing viewpoints.While it was clear that members of thepublic often had diametrically opposedviews on the controversial topic ofeuthanasia and physician-assisted dying,common ground was evident on manyother important issues ranging from theimportance of advance care directives tothe need for a comprehensive palliativecare strategy in Canada.

INTRODUCTIONDuring the winter and spring of 2014, the Canadian Medical Association (CMA) inpartnership with Macleans magazine hosted a series of town hall meetings acrossCanada for the public on end-of-life care issues. The meetings were held with theassistance of the Canadian Society of Palliative Care Physicians and the CanadianHospice Palliative Care Association. A virtual online dialogue was also held on May 12.

ST. JOHNS, NL(FEB. 20)

VANCOUVER, BC(MAR. 24)

WHITEHORSE, YUKON

(APR. 16)

REGINA, SASK.(MAY 7)

MISSISSAUGA, ONT.(MAY 27)


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THE CURRENTENVIRONMENTSeveral recent events and circumstanceshave put a new spotlight on euthana-sia and associated issues in Canada andprovided a backdrop for the CMA townhall meetings. The two most signicant ofthese involve a Supreme Court challengeof current legislation banning physician-assisted death in Canada, and pendingQuebec legislation in this area.

THE CARTER CASE AND THESUPREME COURTIn 2011, the British Columbia Civil LibertiesAssociation, Dr. William Shoichet, GloriaTaylor, who had an incurable disease,and the Carter family challenged thelaw against euthanasia and physician-assisted suicide. In 2012, the BC SupremeCourt ruled the Criminal Code of Canadaprovisions against assisted dying violatethe rights of the gravely ill and gaveParliament one year to rewrite the laws.

The court also granted Taylor, whohad Lou Gehrigs disease, the right to anassisted suicide, making her temporarily

the only Canadian to legally have thisright. However, Taylor died in 2012without making use of this right. KayCarter had ended her life by travelling toSwitzerland and availing herself of theright to assisted dying in that country.

The federal government appealed theBC Supreme Court decision; the BC Courtof Appeal overturned the lower court rul-ing in October 2013 and upheld the ban,stating in part that it was bound by theSupreme Court of Canadas 20-year-olddecision concerning the Sue Rodriguezdecision (in which the Supreme Courtreached a 54 split decision to upholdthe ban).

The Supreme Court of Canada grantedthe British Columbia Civil LibertiesAssociation, the family of Carter andothers permission to appeal the case. TheSupreme Court of Canada is scheduled tohear the case on Oct. 14, 2014, and theCMA will be applying to act as an inter-vener in the case. The federal governmenthas said it has no intention of changingthe existing criminal law against physi-cian-assisted dying.

THE FOLLOWING

QUESTIONS WEREASKED AT THETOWN HALLS

1. Advance care planning:What is needed to facilitatediscussions on advance caredirectives?

2. Palliative care: What is yourvision of good palliative careservices?

3. What is the state of palliativecare in your community?

4. Do you feel you have accessto these services?

5. What needs to be done toprovide the palliative careservices you feel are needed?

6. Physician-assisted dying:What are your thoughts onphysician-assisted dying?

7. If you had access to good-quality palliative care services,would that inuence yourposition on euthanasia orassisted suicide?


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A national dialogue

BILL 52 AND QUEBECIn 2013, after four years of cross-provinceconsultations, the Parti Qubcois govern-ment introduced Bill 52 An Act respect-ing end-of-life care. The bill would havelegalized medical aid in dying.

The legislation also mandated theprovision of palliative care services in theprovince, set protocols for doctors sedatingsuffering patients until they die naturally,and provided guidelines to help compe-tent patients with a terminal illness whowant to end their life because of unbear-able physical or psychological suffering.Two physicians would have to approve therequest for medical aid in dying, which

would have to be made in writing.In February 2014, the Quebec National

Assembly was dissolved and a provincialelection was called before a nal voteapproving the legislation could be held.However, following his election, new Que-bec Premier Philippe Couillard asked to havereintroduced Bill 52, which was passed bya majority on June 5 in a free vote at theNational Assembly in Quebec City.

OTHER FACTORSOther events that put a renewed focus onthe issues of end-of-life care at the time ofthe CMA town halls included the following:

Debates on these issues occurred at theCMAs own annual general council meet-ing in Calgary in August 2013. At thattime, the CMA passed several resolutionscalling for expanded palliative care ser-

vices and greater awareness of the needfor advance care planning and directives.However, media attention focused on thedebates in which delegates voiced someconfusion about the proper terminologyto be used when discussing euthanasia-related topics.

In September 2013, eight days before

his death from a brain tumour, Dr. Don-ald Low, a renowned Toronto microbiolo-gist, published a video with an impas-sioned plea for terminally ill patients tohave access to physician-assisted suicide.

In February 2014, the BC SupremeCourt ruled against family members of82-year-old Margot Bentley, a woman inthe latter stages of Alzheimers diseasewho is being spoon fed against her fam-ilys wishes, as well as, it would appear,her own advance directives.

In March, former Conservative cabinetminister Steven Fletcher introduced twoprivate members bills that would allowmedical aid in dying in certain circum-stances. One of the bills proposed by Mr.Fletcher, a Manitoba member of Parlia-ment, would allow doctors to help peopleend their lives under certain restrictedcircumstances. The other bill would set up

a commission to monitor the system.In April, the CMA and a Parliamentaryall-party committee joined forces toadvocate for the development of anational strategy on palliative care. TheParliamentary All-Party Committee onPalliative and Compassionate Care helda joint news conference with the CMA to

announce its support for the CMA andthe associations current initiative to en-courage a national dialogue on end-of-lifecare issues.

During the course of the dialogue twoprovincial and territorial medical as-sociations Doctors of BC and theOntario Medical Association releasedmajor policy papers dealing with pallia-tive care and advance care directives.

In late May, all parties in the House ofCommons endorsed a motion by mem-

ber of Parliament Charlie Angus callingfor a pan-Canadian strategy to supportand improve access to palliative andend-of-life care. While the motion maynot be binding on the federal govern-ment, it does highlight an urgent needand adds to the mounting pressure onall levels of government to address thiscritical issue.

It is wrong to think thereis no dying with dignity insomebody elses care. Allowingpeople to care for you givessuch an incredible gift to thepeople around you and bringsa huge amount of dignity.

Mississauga town hall participant


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TERMINOLOGYAll of the town hall meetings started witha discussion of the terminology neces-sary to properly discuss end-of-life careissues. Dr. Blackmer said this was necessarybecause confusion continues to exist, evenwithin the medical profession, about whatsome of the terms mean. Dr. Blackmerexplained that while it was going to beimpossible to obtain unanimous agree-ment on the meaning of some terms, it isimportant we are all on the same page.

Through the use of videos, the CMAspelled out denitions that had beendeveloped by its Committee on Ethics andapproved by the CMA board.These includethe following:

Advance care planningA process in which individuals indicatetheir treatment goals and preferenceswith respect to care at the end of life.This can result in a written directive oradvance care plan (i.e., living will).

PALLIATIVE CAREAn approach that improves the qual-ity of life of patients and their families

facing the problems associated with alife-threatening illness. It involves theprevention and relief of suffering bymeans of early identication, assessmentand treatment of pain and other physical,psychosocial and spiritual symptoms.

EuthanasiaKnowingly and intentionally performs anact, with or without consent, that is ex-plicitly intended to end another personslife. In the CMA denition, euthanasia in-cludes the following elements: the subjecthas an incurable illness, the agent knowsabout the persons condition and commitsthe act with the primary intention of end-ing the life of that person, and the act isundertaken with empathy and compassionand without personal gain.

Medical aid in dyingA situation in which a physician inten-tionally participates in the death ofa patient by directly administering asubstance themselves or by providingthe means whereby a patient can self-administer the substance that causes hisor her death.

Physician-assisted dyingThe process in which a physicianknowingly and intentionally provides aperson with the knowledge and/or meansrequired to end his or her life, includingcounselling about lethal doses of drugsand prescribing such lethal doses orsupplying the drugs. This is sometimesalso referred to as physician-assistedsuicide.

Palliative sedationThe use of sedative medications forpatients who are terminally ill, withthe intent of alleviating suffering andmanaging symptoms. The intent is notto hasten death, although this may be aforeseeable but unintended consequenceof such action.

During the town-hall meetings,Dr. Blackmer claried some of the mostimportant terms mentioned in the videosby noting the following:

Advance care planning is a processthat may result in a living will but notalways. He said the conversation withloved ones is the most important partof the process.

Stopping interventions such as feeding

tubes with dying patients is consideredto be withdrawal of care and is noteuthanasia.

Passive euthanasia is no longer usedas a term, as patients and their familiesare recognized as having the right tostop receiving care.

Dying with dignity should not beequated with euthanasia, as a dignieddeath is possible without euthanasia.

Physician-assisted death andeuthanasia are distinguished by who

performs the action: in the former casethe patient performs the action withthe physician providing the means, andin the latter the physician or anotherperson performs the action.

The continuum of palliative care doesnot include euthanasia or physician-assisted death.


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A national dialogue

At the town hall meeting in White-horse, Dr. Blackmer added that eutha-nasia is not a part of the palliative careprocess. This was echoed by a number ofthe palliative care experts speaking at themeetings.

In Regina, an audience memberexpressed concern about the denition ofmedical aid in dying as she found it aconfusing phrase. Dr. Blackmer noted theterm was included in the glossary usedin the dialogue because it was raised butnot dened in Bill 52 in Quebec. He saidbecause of the implication that physi-cians would be involved in this process,

the CMA felt it was important to clarifythe term and specify that medical aid indying referred to either euthanasia orphysician-assisted dying. Its very clearlyseparate from palliative care, he said.

In Vancouver, a question was askedabout the difference between palliativesedation and the normal relief of painand mental anguish that are offered everyday on a palliative care unit. It was notedthat palliative sedation is offered whensymptoms are recognized to not be treat-able and people may choose to sleep untildeath. At this town hall, another audiencemember talked about the hypocrisy of

distinguishing between palliative sedationand physician-assisted death because aperson could foresee the natural conse-quences of their actions. Dr. Blackmersaid while the consequence of the actionmay be the same, ethically it is the intentof the action that differentiates the two.This continues to be a controversial issuewithin the medical profession.

In general, the terminology proposedby the CMA was well accepted by audi-ence members. Dr. Blackmer said the CMAhas reached out to elected ofcials of allparties to promote more widespread useof this terminology.

There are many experiencesin our lives and things thathappen to us that we cannotforesee. You can ask someonewhat they would want doneif they had a head injury but

there is really no way youcould know without being inthat situation. The same thingwith tube feeding: How would

you know in advance what you would want? Becauseonce youre in that situation

you may change your mindwith no way to communicate

that. For that reason, I wouldreally want someone wholoves me to take care of meat that time.

Vancouver town hall participant


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ADVANCE CARE PLANNINGAND DIRECTIVESThe discussion of the importance of ad-vance care planning and directives was putin context by recent survey results showingthat while 95% of Canadians think it is im-

portant to have a clear conversation with aloved one about the type of care they wantat the end of life, only 30% have had sucha conversation and only 16% have donesomething as a result of the conversation.

At the town hall meetings, there wasalmost universal agreement about theimportance of advance care directives andthe need for people to have discussionswith family members and loved ones abouttheir wishes for end-of-life care at variousstages throughout their life.

In responding to why the percentage ofpeople making advance care directives ordiscussing this issue was so low despite itsacknowledged importance, Dr. Susan Mac-Donald, medical director of palliative carefor the Eastern Region of Newfoundlandand president-elect of the Canadian Societyof Palliative Care Physicians, attributed it topeoples inborn discomfort with death.

Dr. Danusia Kanachowski, a palliative care

physician in Whitehorse, said many peopleare hesitant to ll out an advance directivebecause it will be perceived as being nal.Our views change over time, she agreed,so advance care plans can be changed and your proxy will know that. Dr. Blackmer

added that some people are afraid that ifthey say they do not want to be kept on aventilator, for example, then no one wouldever put them on a ventilator. The key, hesaid, is to have a discussion with loved onesand physicians about quality of life anddene under which circumstances use ofa ventilator may be acceptable. It doesnthave to be black and white. Medicine isnever black and white, he said.

At the Whitehorse town hall an audi-ence member described how, when she

was lling out her advance care directive,she stopped in the middle of the process,because, while it was natural to say shedid not want to suffer at the end of life,she knew herself to be a ghter. Im afraidwhat I said on this paper was maybe notwhat I would want. She said this situa-tion scared her because she realized peoplemight follow her written wishes rather thanwhat she might want at that time. This is

I think our society andour culture seems to bein a state of denial. Deathshould be as natural for usto discuss as birth control orsexually transmitted disease.Its a fact of life. We need todiscuss it openly.

St. Johns audience member


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A national dialogue

why she said she would be hesitant to llout a form at age 30 or 40 that might notreect her current perspective at age 64.

Dr. Doris Barwich, president of theCanadian Society of Palliative CarePhysicians and executive director of thenewly founded BC Centre for Excellence inPalliative Care, said advance care planninggives people the opportunity to considerin advance their values and preferencesand communicate these to other people.The literature shows this to be a win-winsituation because it allows patients to beactively involved in their own care whileproviding health care providers with cleardirection on how the patient wants to betreated.

Dr. Kanachowski said although it soundscorny to some, conversations aboutadvance care planning are often describedas a gift to those having to make deci-sions at the end of someones life becausethey provide clarity about what the dyingperson wanted.

We all have an obligation to prepare ourexit strategy, said Claire Blanger-Parker,a palliative care volunteer and panellist inRegina, said. We need to leave our familywell prepared for our departure.

Dr. Blackmer said people make themistake of thinking the discussion aboutadvance care directives will keep foranother day, and that day keeps getting

pushed further and further into the future.We put it off and then it becomes toolate. He said the best time to have thisdiscussion is when you are healthy, whenthere is not a crisis situation and everybodycan discuss issues openly and rationally.

My (two) children are in their 40s and I hadto y my daughter to Vancouver and buy several bottles of good red wine. It was adifcult start but I wanted them to know mychoices (about end-of-life wishes) and so we spent about two or three hours over a mealin a restaurant discussing these issues. I have had emails from both of them since sayingThank you. We feel much more relieved nowknowing what you would want.

73-year-old survivor of breast cancerat Vancouver town hall

Discussion at the Regina town hall meet-ing focused on the important role of theactual substitute decision-makers or prox-ies who are designated to make choicesaround end-of-life care when a person is nolonger competent to make those decisionsfor himself or herself.

Its impossible to put down on paperevery possible scenario it simply doesnt

work, said Dr. Darren Cargill, a palliativecare physician at The Hospice of Windsorand Essex County Inc. and panel memberat the Mississauga town hall. This is why it

is so important to designate a substitutedecision-maker or proxy who understands your values and wishes, he said.

I see these advance directives from time totime and the ones I see are often designedby lawyers. I get the sense of someone whois trying to anticipate everything that could possibly happen and have some control inadvance over it. The best control you can have is somebody who you can trust, who shares your values.

physician at Mississauga town hall

Dr. Blackmer said substitute decision-makers often need to be better educated asto their responsibilities. Proxies need to beavailable to doctors and other health careproviders even if a living will exists, he said,because the law in most provinces requiresthe physician to talk to the proxy aboutthe patients wishes and interpret the livingwill through this process. He explainedthat this role is very different from that ofan executor of a will. It is for this reason,he said, that it is important that the proxyunderstand the persons goals, aspirationsand values to recommend the right action.At the Regina meeting, Dr. Ken Stakiw,

co-medical director of palliative careservices for the Saskatoon Health Region,added that the importance of the role ofthe proxy is such that selecting this person

My son has to accept thatI want to talk about dying.

Thats very difcult forfamily. They dont want totalk about that.

Whitehorse town hall participant


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should not be left until the last moment. Itis also important to appoint someone whois going to outlive you, he added.

Another important point made at thetown hall meetings was that differentprovinces or territories can have differentregulations and language respectingadvance care directives and how theywork. The nuances of these legislativerequirements were discussed at eachtown hall. For example, at the Vancouvertown hall, a general notary said it wouldbe irresponsible not to have advancecare choices spelled out in writing. Hewas also critical of the use of the termliving will as he said this does notapply in British Columbia, where theproper terminology is representationagreements as spelled out in legislation.

Were in BC, not Toronto, he said. Get it inwriting. Surely its not that complicated.Why cant we just have something simple. Vancouver audience member describing

the complexity of a living will template

One of the main concerns raisedrepeatedly by audience members whendiscussing advance care directives was

that such directives were not alwaysfollowed by the physicians or health careproviders caring for the patient.

At the Vancouver town hall, specificreference was made to the Margot Bent-ley case, where Bentley was allegedlykept alive against the wishes she hadexpressed in an advance directive. Dr.Blackmer noted there has been a lot ofdiscussion about the story and the casewas an extremely difficult one becauseof the type of care that was provided

and the specific legal circumstancessurrounding it. He stressed that thecircumstances are very specific to thisparticular case.

Dr. Barwich added that one of the dif-culties and limitations with advance caredirectives is that they cannot force healthcare providers to do something that isillegal or contrary to their duty to care,such as to assist in euthanasia. We have

limitations which we live within and unfor-tunately this is one of them.

My wifes aunt had an advance caredirective that said no ventilator and thedoctor and the family decided that was notwhat she meant so nine months later shedied on a ventilator.


Recently my husband had brain surgery andwas not doing very well. I said to the doctorsyou know, if he continues like this I know hedoesnt want to live. And they said, if youdont have a representation agreement onthe chart we will do resuscitation. I raced home to get that representation agreementand put it on the chart.


My father passed away last November atthe age of 96 and he had 96 good yearsand six rough weeks. When dad moved toRegina in 2011, he sought a Saskatchewanlawyer to make sure he had a Saskatchewan health care directive. Being of very soundmind and able to communicate his wisheswith the lawyer and myself he drew up acareful plan. Then, last June when he wasadmitted to hospital here in Regina they

asked him, Do you have an advance caredirective and I said, Yes, here it is. Andthey said, Oh well , put that away. We want you to ll out our forms and ll out this new form. Could you read it carefully andmake decisions now please. I said, No, avery short time ago when he was able tomake decisions he lled out this form and

Id like you to use this. Reluctantly theytook it and they highlighted only the areathat said do not do the following but theydid not highlight the paragraph earlierthat said in the following situation do notdo the following. I was very concernedthat it did not reect his wishes so I thinkthere needs to be some discussion about standardization. I recognize how difcultit is for health care professionals to lookat a hundred different types of healthcare directives and understand each one

individually. Regina town hall participant

Filling out a living will, for me, was aliberating process. It didnt mean come and get me now, Im ready to go because Im not. It gives a certain level of comfort to mychildren and my spouse in that situation. Ithink it allows people to live a fuller l ife.

Whitehorse town hall member


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A national dialogue

The importance of involving theattending or family physician in discus-sions about advance care planning wasalso raised by a number of people. A nurseat the Vancouver meeting said what ismissing in much of care is physicianshaving conversations with patients aboutwhat a diagnosis really means, what theprognosis is and what the impacts ofthe treatments offered are in terms ofoutcome and the role of the entire healthcare team, including nursing members. AMississauga town hall participant madea similar point about the importance ofeducating patients about the potentialimpact of treatment decisions and theoption of not receiving those treatments.

Good communication can help torelieve much of the discomfort that sur-rounds the situation and also to buildtrust, especially if it takes place withproviders who are trained in talking aboutthese issues, said Wenda Bradley, a familycaregiver and community nurse and pan-ellist in the Yukon.

At the Mississauga town hall, Dr. Cargilltalked about the importance of commu-nication as part of the art of medicine. Hesaid many physicians are unprepared and

untrained to initiate discussions aroundadvance care planning and he said veryproductive conversations can be initi-ated by just asking the patient What isimportant to you? He noted that manypatients welcome having their physicianstart the discussion about advance careplans and he said it was amazing how farmany patients get through the healthcare system before the issue is raised.

Dr. Kanachowski stressed that advancecare planning is not just one conversation,as both the public and physicians oftenbelieve, but rather a number of conver-sations that occur over time. She saidphysicians need to be encouraged to talkabout end-of-life care planning and whatis possible and that this is part of their job. End-of-life care is about planning,she said, rather than just dealing with animmediate and acute medical problem,which is usually the case when someonesees a physician. An audience memberin Whitehorse said it may be that thesystem is not properly acknowledging andremunerating physicians or nurse practi-tioners for the amount of time necessaryto adequately discuss end-of-life carewith patients.

My grade 12 sociologyclass is looking at thistopic currently. What

would you want youngpeople to consider mostwhen thinking about endof life issues? Many ofthese students are ourfuture caregivers.

question to Dr. Francescuttiduring the online dialogue

One area would beadvanced care planning.This is something familiescan talk about right now,tonight.

Dr. Francescuttis response


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PALLIATIVE CARECMA President Dr. Francescutti intro-duced each town hall with a descriptionof his mothers positive experience withpalliative care before she died from coloncancer last June. It was a pleasant experi-ence, he said, because his mother broughtthe family together and she received out-standing care at the West Island PalliativeCare Residence in Montreal. He said hismother was impressed by the compassionof the staff in helping her and in support-ing the family. She left feeling that shehad come to the nal chapter in a placethat was taking care of her needs. Thatswhat palliative care is. The thought of howshe passed away gives me comfort everysingle day, he said.

At each town hall, panellists and audi-ence members tended to talk about theexcellence of palliative care services inthe centre where the meeting was beingheld but the absence of such services inother communities or more remote areas.Dr. Stakiw put this most bluntly at theRegina meeting when he noted that whilepalliative care services are well organizedand generally well run in urban centres inSaskatchewan, the situation falls apart

even just a few miles outside of thesecentres. Blanger-Parker said that the lackof such services on First Nations reservesin Saskatchewan is shocking. Dr. Cargillattributed the excellence of palliative andhospice care services in certain communi-ties to individuals and grassroots move-ments who have advocated to get theseservices.

The excellence of care provided by spe-cialist palliative care centres and multidisci-plinary teams was often contrasted by the

horrible deaths of family members whowere not able to access such services.My dad died in Regina in a facility on

Jan. 27 and it was horrible. I have sat withthousands of people in my career who havedied and it has been beautiful. When mydad died I stood up and said, Take him now,I have had enough of this. It was a lack ofeducation. My dad lived in Regina and hedidnt get palliative care. I was in touch

with palliative care but they couldnt helpthe generalist physician because he didntrequest it or didnt want it. So not only didmy dad suffer but I suffered and my familysuffered. We have to do something abouteducating our generalists and seeing thatpalliative care is delivered to all Canadians. Regina town hall participant

Experts in palliative care took pains toexplain the scope of the services beingoffered. Dr. Barwich explained that the con-cept of palliative care evolved a number of years ago in response to medicine becomemuch more technology based, diseaseoriented and lacking a focus on the personwith an advanced or terminal illness. Theaim of palliative care is to compile a teamand resources that can meet the patientsphysical, mental and spiritual needs, shesaid. It is also to acknowledge the narra-tive of dying where the persons wishes arehonoured with good pain and symptommanagement. In St. Johns, Dr. MacDonaldsaid she wanted to extend the denition ofpalliative care because she looked after theliving rather than the dying. She said herwork is a wonderful job rather than a sad job as she works with family physicians andother specialists to help manage the physical

and psychosocial symptoms of the peoplefor whom she cares.

Palliative care brings the whole fam-ily together, said Renae Addis, a familycaregiver and director of fund developmentand communications for The Dorothy LeyHospice. Addis, who was on the panel ofthe Mississauga town hall, said before hermother received palliative and hospice care,she and her sister were performing manytasks nurses would be doing in caring for her.Access to palliative care allowed me to be a

daughter again, she said.I know some of the most tender experi-ences in my life are at the bedsides ofpeople who are dying, said Louise Donald, apalliative care volunteer and member of thepanel in Vancouver.

Asked to explain the difference betweenpalliative care and end-of-life care and whocan provide palliative care, Dr. MacDonaldsaid palliative care involves a longer period

of time and has a broader focus. She denedit as the provision of symptom manage-ment, she said, for people who have alife-limiting or life-threatening condition,no matter what age. She said family doctors

provide palliative care as do community-care nurses. Most of palliative care is basicgood medical and nursing care, she said.

Dr. Kanachowski said many doctors seepalliative care and end-of-life care as beingsynonymous when actually palliative carecan begin far upstream when a person rstbecomes ill with a life-threatening illness.She said a study of people with metastaticlung cancer showed that those who receivedpalliative care services from the time ofdiagnosis lived longer, with better symptom

control and quality of life.When it comes to end-of-life care youonly have one chance to do it right, Dr.Stakiw said, noting that palliative carespecialists want to work with people with alife-threatening disease early in the processeven if they are on the road to recovery.

In St. Johns, one audience membernoted that through knowing the right peo-ple and having the right connections, she

I had a really good experiencewith palliative care. Mymother had chosen to stayhome to die and werealized how much strainthere was on our father tocare for her. So a week beforeshe died we moved her topalliative care and it was arelief for all of us becauseit was such an incredibleexperience for all our familyto have somebody look after

her, while we were focusingon taking care of dad andeach other.



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A national dialogue

was able to provide excellent care for hermother, including 24/7 home visits fromher family physician. Because of this careand from having an advance care directive,she said, her mother was able to spend herlast days in her own bed, surrounded by herfamily. The woman said she has connectedwith many others since her mothers deathwho have not been as fortunate in havingthe same knowledge and support. Shequestioned whether patients and families

know they have the option of not dyingin hospital and that there are options andsupport available. She said the three mostpositive elements that came out of thelast month of her mothers life were thather mother got her wish to die at home,that she felt great that she was able toprovide this for her mother and that otherfamily members were able to witness suchcompassion.

The lack of training for medical students inpain management and other aspects of pal-liative care was an ongoing theme. Dr. Mac-Donald noted that 10 of the 17 medicalschools in Canada offer fewer than 10 hoursof palliative care training and Dr. Blackmersaid this was in stark contrast to the averageof 80 hours of education in pain manage-ment received by veterinary students.

An audience member in Regina talkedabout the need for buy-in from physicians,

health care providers and health regions forproper palliative care services and said thatthis currently doesnt exist. She also reiter-ated the need for proper education but saidthat without a recognition of the need forthese services, teaching people how to deliverproper palliative care would be wasted.

Eight years ago, my mother at the age of98, in excellent health and living alone,

had a frankly psychotic episode as theresult of dehydration. She was taken tothe hospital it was a long weekend and her own doctor was out of town andthe duty doctor had her put in the generalmedical ward. She was put in restraintsand deemed to be refusing medicationbecause in her paranoia she felt all the people were trying to poison her. WhenI arrived at 6 pm on Sunday, I had tothreaten legal action and demanded a

statement in writing as to why they were not hydrating her. She did have a DNR [do not resuscitate order] and we were prepared to let her go, but not screaming hysterically in restraints in a hospital bed.They did begin to hydrate her and we put some medication into the fluids they were giving her. In three days, she was in good spirits complaining she would lose hervolunteer job if she was not released from


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hospital. She died two years later in her sleep. The point based on this is how do weconvince people in a general medical wardthat palliation is what is needed?


My husband just recently passed away. Hewas in a hospice for two months but he justdid not get the care he needed there becausethere were 16 patients and only two nursesand two helpers on a shift. He had trouble

with his breathing and the machine brokedown so they had to rush him to BurnabyGeneral [Hospital] because the hospicecouldnt help him. There, he died peacefully. So Im putting a plug in for Burnaby GeneralHospital because they did more than the hospice could do. There is just not the

funding there [at the hospice]. They cant give people the care they really, really need.

Vancouver town hall audience member

My mother is 92. She has four or ve major [conditions] and was recently diagnosedwith a bowel infection and she did not wantthe antibiotic. I spoke on her behalf and thedoctor understood. The difculty was with her general practitioner who had a difculttime understanding why the family woulddeny something. Mississauga town hall audience member

At the Mississauga town hall there wassome discussion of the role and value ofpatient navigators advocates who workwithin the health care system to ensurepatients are matched with the proper careand services in this case, with specicreference to palliative care. Dr. Cargillnoted that given the complexity of ourcurrent health care system, such navigatorsare playing an increasingly valuable role.

The need for a national palliative carestrategy and proper funding for palliativeand hospice services was raised repeatedly.Were running as fast as we can, said onehospice worker, who pondered how a com-

parable level of service could be providedwithout volunteers, given the low level offunding from the publicly funded system.

Dr. Blackmer said that it is incomprehen-sible that palliative care services are notfunded properly even though death is onemedical condition everybody will experi-ence. The reason is, its not politically sexy.It doesnt score political points with thegovernment.

I had to advocate strenuously on behalf

of my mother for palliative care, thusmissing out on the time I could just be with her. End-of-life planning and advancecare directives, as well as palliative care, should be on the continuum of care offeredto all Canadians. The right care should not be dependent on how well the family

can advocate for the individual; it shouldbe offered. We have the right to receivecompassionate, end-of-life care and to have a team of caregivers who value andunderstand palliative care as the specialtythat it is. My concern lies in the fact there is not a consistent standard and approach to palliative care across the country.


As a full-time worker in the health care system, I think a huge need is to increase thelevel of palliative and hospice care availableto all Canadians.

Online dialogue comment

Having a loved one who is dying is hardenough but when you have to come outof your own home and actually move somewhere else to be with your lovedone who is dying, it makes it horrible foreveryone, so I think we need to put moneyinto the communities.

Whitehorse audience member

A 96-year-old audience member inRegina talked about his wife dying eight years ago in palliative care. Anybody, inthat stage of life, if they can get pallia-

tive care, their troubles are over, he said,because she was able to get all the painrelief she needed. He described pallia-tive care as a godsend and said the onlyproblem is that not everybody who needsit can get access to it.

My understanding is that in my healthcare authority there is one person foradvance care planning. There has to bemoney behind getting the message outto everybody and please dont make it a

volunteer-driven initiative.


Everyone should have access to palliativecare because we will all die.

Whitehorse audience member


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A national dialogue

EUTHANASIA ANDPHYSICIAN-ASSISTED DYING

Despite its emotionally charged na-ture and the divergent views expressed,debate on the topic of euthanasia andphysician-assisted dying at all the townhall meetings was consistently markedby civility and respect for the views ofothers. At each meeting, Dr. Blackmer sum-marized the current public policy environ-ment concerning medical aid in dying inCanada, including Bill 52 in Quebec andthe Carter case before the Supreme Courtof Canada. He also summarized the CMAs

current policy, which frames the issue as asocietal one and currently opposes physi-cian involvement in physician-assisteddeath. He also listed the jurisdictions (cur-rently nine) where euthanasia is legal. Dr.Blackmer noted that in jurisdictions suchas Oregon where patients have legal accessto medication that can end their life, theyoften choose either to not ll the prescrip-tion or to not use the drug once they have

it because it is the control and respect forpatient autonomy that emerges.

Audience members expressed bothviews that supported the current lawsin Canada prohibiting euthanasia andphysician-assisted dying and views thatcalled for a change in those laws to permitthese practices.

I had a grandmother who had Alzheimersand I have thought about it a lot. I know thatif I started having symptoms of Alzheimers Iwould like access to The Pill [a lethal dose ofmedication].


I think palliative care is an absolutely necessary part of our medical system. Andyes we need more of it. I also believe that ifwe had all the palliative care that anybodycould possibly need, there are those thatdont want to go through that process. Ibelieve in their voice and their choice.


By refusing a persons legitimate requestto die, you are in fact causing that person

immeasurable harm and suffering. Mississauga town hall participant

Unfortunately, in Canada we are creatinga two-tier health care system in that onlyCanadians with money can travel to theseEuropean and American jurisdictions toreceive end-of-life assistance.


We cannot proceed until we get a varietyof opinions from fellow Canadians, or we

run the risk of creating solutions and a society that does not support all beliefsand values. This is what this series isabout.

Online dialogue participant

In response to a question posed bythe CMA at all town halls, many agreedthat if a good system of palliative carewas available to all Canadians this might


17/19

signicantly reduce the call for a change inthe law. Many palliative care experts suchas Dr. Barwich who served on the panelsat the town halls said it was premature toeven discuss changing the law regardingeuthanasia until access to palliative careservices is available. On the other side ofthe argument, a speaker at the Mississaugatown hall argued that palliative care stillfell short of adequately controlling painin a signicant number of patients andso physician-assisted dying remained anacceptable option.

I was at home feeding the dogs and thecats and the sh when he [my husband]died. He would have liked me to be thereto hold his hand. He would have liked to have said I want to die today at 3 pm tellLouise. And I would have been there.


There are so many people becoming partof the aging population and there is no waythere is going to be enough palliative care facilities created. So people really should have a choice whether they want physician-assisted dying. I treat my animals betterthan the death I had to watch my mother go

through and my God Im not going throughthat sort of thing.


Many who opposed legalizing physician-assisted dying cited the slippery slopeargument that indications for physician-assisted dying could be expanded signi-cantly despite initial safeguards. This wouldespecially put vulnerable populations, suchas seniors with dementia, at risk, theyargued. While those against euthanasia cited

countries where euthanasia is legal andindications have been expanded, such asBelgium and the Netherlands, proponents ofassisted dying countered with the exampleof Oregon, where strict controls remain inplace.

A 96-year-old participant at the Reginatown hall questioned why a democraticsociety such as Canada could not buildenough safeguards to protect against the

slippery slope if physician-assisted dyingwas made legal. Theres no such thing as aslippery slope, he said.

To address the slippery slope argument some people abuse pain-killing drugs,but we do not ban them for all, but legislate [through] regulation.

Online dialogue comment

One has to think very carefully about whatwe are letting ourselves in for if the CMAwas to support the government in legalizingeuthanasia.

Retired palliative care specialist, Regina

I think we need access to physician-assisteddying and voluntary euthanasia in situationswhere palliative care wont work. If somebody has an untreatable suffering that is going tolast for two months, there are some kinds of suffering that only death can end.


Dr. MacDonald said there are many vul-nerable groups within Canadian society,including the disabled, children and thedisenfranchised. She said she agreed thatdrafting any legislation to protect all of

these people would be almost impossible.She said in her experience it is healthypeople who are most vigorous in arguingin favour of legalizing euthanasia. Dr. Mac-Donald said only a small percentage of

people would consider euthanasia buteverybody is going to die so people shouldbe vigorously arguing for good palliativecare.

The issue of how the perceptions ofthose with serious or terminal conditionscan change if they received good care wasraised several times. Dr. Blackmer said hisclinical work involves people with spinalcord injuries. He said studies have showneven health care providers believe manypeople with quadriplegia have a quality oflife that is only a two or a three out of tenwhereas if you ask that person they willrate it at an eight or a nine especially oncethey have had a chance to adjust to theirnew life. He said in his work he often seespatients who, when they have just beeninjured, ask to have their life terminated.But after adjusting to their new reality, hesaid, they often value the independencethey still have.

[When I was] nine, my grandmother, whoI lived with at the time, died of stomachcancer. The nurses taught me how to changethe stoma on her stomach. I rememberbeing with her and then also remember

when she died. Maybe this is selsh but Iwouldnt have wanted to have been robbedof that. I dont think she would have chosento rob me of that and that bond that we shared. I know she was in a lot of pain


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A national dialogue

but I think if she was dying now she might have felt she should have chosen physician-assisted dying and we would have beenrobbed of that bonding period of time andthose most crucial memories I have of her.

34-year-old Whitehorsetown hall member

They [my parents] said they wanted to diebut there was nothing we could help themwith. If they had been my dog or my cat Iwould have put them down and I would have had no qualms about doing so. Butthat wasnt an option.


(The comparison about the ease withwhich family pets can be euthanized versusthe current legal situation for humans inCanada was made by a number of partici-pants at different town hall meetings.)

We have palliative care for physical suffering but there is emotional sufferingas well. I am 87 years old. I have outlivedall my siblings and all my old friends and

I can no longer do most of the things thatI really enjoy. I live in a facility which isvery comfortable and very good. I have a96-year-old companion who is blind andcan almost not hear at all but she has alively intelligence and is trapped in this shell. What palliation can be offered to her? I have a radical proposal to make.Most of the people in my age group have

ailments which are painful, uncomfortablebut not terminal so we are doomed to livean unlimited amount of time with pain,discomfort, boredom and loneliness.What palliation is there for that? I wouldlike a law that says if you are over 75 orterminally ill you have the right to ask for physician-assisted death.


What about the mentally ill? They mightwant to kill themselves tomorrow or the next day. And if you have a law they would just do away with themselves. But if you

talk to them and with psychotherapyand medication they might change theirmind. So I really oppose euthanasia on allcounts. It has absolutely no respect for lifewhatsoever.


I think, as physicians, you see dying more.I think that it is really important that youdo the right thing. I worry about the ethicsof physicians if they go from prescribingmedicine to prescribing something that

kills. How is that going change physiciansand our medical ethics and how is that going to change our patients trust?


I want the option to choose when andwhere and how I die.


It seems to me that there are many people for many reasons at different times of lifewho may want to end their lives. It seemsto me that for the vast majority of people palliative care is the answer.

Regina town hall participant

I want it to be a choice of how I go andwhen I go. Nobody can take that from me.


Dr. Blackmer noted that the physiciansgo into the profession to relieve pain andsuffering and the oath they take obligesthem not to hasten death. Legalizing phy-sician-assisted dying would blur the linesabout what physicians are supposed to bedoing, he said. Our philosophy is that ofcare and not killing, a physician stated atthe Vancouver meeting . At the Mississaugatown hall both a physician and a memberof the public raised concerns about theethical dilemma facing physicians if theywere involved in physician-assisted dyingwhile at the same time striving to treatand cure patients.

The Mississauga town hall featured alengthy discussion about the potential

role of physicians and specically theCMA in supporting what was describedas the majority public opinion wanting tochange the law to allow physician-assisteddying and support the right of patientsto determine their own fate. Dr. Black-mer responded that while the medicalprofession had a right to its own opinion,it would ultimately be society that woulddecide what Canada would do and thatthe profession would be respectful of that.

While the perspective of First Nations

peoples was not specically provideddirectly at any of the town hall meetings,the CMA was urged to gain a better under-standing of how different First Nationsdealt with death and the dying process.One observer noted the value First Nationspeople put on the dying process and thesense of community and sharing that isenabled when a person is dying.


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CONCLUSIONSThe aim of the national dialogue processwas to provide both the public and themedical profession with a societal perspec-tive on the issue of end-of-life care. Themeetings and the online dialogue allowedfor the discussion to happen and providedsome key observations.

The terminology developed by the CMAto discuss end-of-life care should bewidely communicated to health careproviders, policy-makers and the public.

All Canadians should discuss end-of-lifewishes with their families or other lovedones.

All Canadians should prepare advancecare directives that are appropriate and

binding for the jurisdiction in which theylive.

Canadians should revisit their end-of-life care wishes periodically, recognizingthat health care providers will interpretthese wishes on the basis of a number ofvariables, including written advance caredirectives, conversations with loved onesand, input from a substitute decision-maker.

A national palliative care strategy shouldbe developed.

All Canadians should have access to ap-propriate palliative care services.

Funding for palliative and hospice careservices should be increased.

More education about palliative care

approaches and as well as how to initiatediscussions about advance care planningis required for medical students, residentsand practising physicians.

The Canadian public is divided onwhether the current Canadian ban oneuthanasia and physician-assisted dyingshould be maintained or not.

If the law in Canada is changed to alloweuthanasia or physician-assisted dy-ing, strict protocols and safeguards arerequired to protect vulnerable individualsand populations.

The potential impact on the Canadianmedical profession of legalizing physi-cian-assisted dying should be carefullyconsidered and studied further.

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CMA End-of-Life report

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