NEWSLETTER. Conference announcement Canadian Association of MAiD Assessors & Providers A MESSAGE FROM THE DIRECTOR STEFANIE GREEN

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1 A MESSAGE FROM THE DIRECTOR STEFANIE GREEN STARTING UP: ONE TOWN AT A TIME TANJA DAWS CROSS-CANADA CHECK UP CASE REVIEW WHAT S YOUR OPINION? NEWSLETTER IN THIS ISSUE A Message from the Director... 2 Starting Up: One Town at a Time... 3 CAMAP News... 5 My Opinion: Ellen Wiebe... 6 Case Study: What s Your Opinion?... 7 Cross-Canada Check up: British Columbia Manitoba New Brunswick Newfoundland Ontario Conference announcement... 15!1

2 A Message from the Director WELCOME TO THE FIRST ISSUE OF CAMAP S NEWSLETTER! So much has happened in the past 6 months since MAiD became legal in Canada, it s really extraordinary. Canadians have started asking for and receiving the care they now have the right to as they approach the end of their lives and we as caregivers have been given the incredible privilege of assisting them at this important juncture. Some of us have willingly stepped forward to do this work while others have remained fearful. Some jurisdictions have moved forwards with both infrastructure and good will, others have stalled before they've gotten started. Stefanie Green In this issue you can read about what s going on in several highlighted provinces across the country and what your colleagues are experiencing. We also hope to highlight issues through case review and opinion pieces. We welcome your input, your suggestions for future newsletters and your opinion about what you read here. If you have a personal experience or an opinion you would like to share please send it to us for consideration of publication in our next newsletter. MAiD provision involves a team of caregivers- nurses, physicians, nurse practitioners, pharmacists, hospital administrators, lawyers, social workers, spiritual counsellors, family and friends. Every one of these members of the team is important and all are welcome to join CAMAP, to join a community of caring and compassionate caregivers in the work that we do and the support we offer each other. Canadians have started asking for and receiving the care they now have the right to Stefanie Green camap.office@gmail.com!2

3 JANUARY 2017 Starting Up: One Town at a Time Establishing A Maid Service In A Small Town The Early Days In February 2016 the reality of MAiD dawned on us. We live in a smallish rural community on Vancouver Island, BC, with a population of in our wider catchment area. Our only local hospital, St. Joseph s General Hospital is Catholic owned but publicly funded. We function outside the Vancouver Island Health Authority and therefore feel slightly isolated. No one breathed a word of MAiD. Questions started to brew in our heads and a few patients made enquiries. We did not know who we were. We were individual docs in favour of MAiD. We knew 87% of British Columbians were in favour of MAiD and that included 81% of Catholics, but we had no way to know who felt the same - or respectfully opposed. No one knew whose toes could be stepped on or who would waltz. Tanja Daws The hospital produced a draft document detailing not allowing MAiD in the facility come June This became the first point of open discussion at a Department of Family Medicine meeting. A motion was put forward to pressure the hospital to provide a MAiD service. A closed ballot vote was split 11 in favour, 10 opposed and 4 abstained, sadly just missing quorum. With the discussion we could however identify who sat on which side of the fence, and that is all we needed another who felt the same. I s became we. Dr. Jonathan Reggler and I formed our own working group, from scratch, with nothing but the internet as backup. We will admit to also having had an ample supply of conviction, passion and stubbornness. The silence from all the governing bodies around us was deafening. We ploughed ahead and researched all possible euthanasia models including the Netherlands, Belgium, Switzerland and Oregon. We drafted protocols, Learning from our forms, kits and a handbook. We started hearing noises from other health colleagues we authorities and eventually our own College and Health Authority. What we were able to so diligently designed was in line with all the rules and guidelines as they troubleshoot long were unfolding. Our handbook MAiD Protocols and Procedures Handbook, before trouble Comox Valley has seen numerous updates since and is still circulating all found us over the country, free for all to use, helping other kick starters get off the ground. We have great admiration for and owe much gratitude to Dying with Dignity Canada. They hosted a webinar by Drs. Ellen Wiebe and Roey Malleson, who were the first doctors outside Quebec to have handled a MAiD case. Their teaching and sharing were invaluable. The dark ages were over. Networking was a natural result and we soon formed a team of BC providers, together with Drs. Green, Trouton, Park and Pewarchuk. A few attended the Euthanasia conference in Amsterdam and shared their knowledge freely. Our eight pack pulled the BC MAiD sled for a few months. We established a maiden group for advice, support and knowledge sharing. It was a pit stop crew for the small isolated we out in the middle of nowhere. It was also a SCEN group (based on the Dutch model) for vetting difficult cases and questions. It eventually gave birth to the nationwide MAiD CANADA listserve group for providers and CAMAP. The early days were still fraught with difficulties. Learning from our colleagues we were able to troubleshoot long before trouble found us. We started to expand our local network of supportive!3

4 doctor and nurse practitioner colleagues, admin staff (including our own offices) and pharmacists. We liaised with local funeral homes, the ambulance service and hospice society. We had to prepare ourselves, our colleagues (both supportive of MAiD and opposed) and all the other services that would eventually be involved in MAiD. We had to practice inserting IV s again - we were a bit rusty after all. We approached our local Division of Family Practice for support. They were helpful in arranging a CME event for our local colleagues, where we, the most experienced two left feet, could lead the dance. They agreed to host our forms and handbook on their website as a resource for colleagues and patients who would need a self-referral channel. Our Island Health Authority came online shortly after and became a wealth of support. We sought ongoing feedback from all the involved parties to learn and improve. photo: Tanja Daws, BC We honour the patients and families whose journeys will forever be connected to ours. Our respective first patients were incredibly brave, on the edge of their personal abyss, trusting us with the most sacred act of compassion with no experience. But we were not alone. We were a team and and we were thoroughly prepared. We worked hard. We had the support of our 8 pack, Dying with Dignity, our staff, pharmacists, nurses, dancing colleagues, Division, Health Authority, family and friends. If 2 docs in a smallish rural town can pull this off, any community can. Tanja Daws!4

5 CAMAP News As we finish up the paperwork to establish ourselves as a legal, non-profit entity we have already begun work on several fronts. We have established connections with Canada s leading advocacy group Dying With Dignity Canada, and with advocacy groups in other countries. We have developed our CAMAP website and developed a website for our upcoming conference- MAiD Calling all MAiD Providers! Most importantly perhaps we have struck a committee to establish Practice Guidelines for excellence in MAiD care in Canada. This committee will spearhead several topics that will be researched and our experiences gathered. Early topics being evaluated are drug protocols, both intravenous and oral, and we expect guidelines to be produced this spring/summer. There are several other important topics to be tackled over the first year or two and each will require a team leader. If you are interested in taking a leadership role please be in touch with our office. CAMAP has made an application to a review and ethics board to begin gathering essential data from our membership that can be used to compare our work to that of other global jurisdictions and to help improve our deliverance of MAiD. This data will help inform us of who asks for MAiD, why Canadians ask for MAiD, and why they sometimes do not proceed. Please do your part in providing this essential data when you are asked to do so in the near future. If you are reading this still, you ll know we have produced our first newsletter. This newsletter is for you, our membership, so please let us know what you think. How can we improve? And of course, we are planning our first MAID conference- MAiD2017- June 2nd and 3rd in Victoria, BC. The line-up of speakers is phenomenal and the conference promises to be a true update on the real and important issues. It is a way to meet with each other, to support each other and to learn from each other. Have a look at the program for yourself! Together with leaders in the field we will celebrate the first anniversary of the legalization of MAiD in Canada. See you all there! Have you joined the CAMAP national list? We are a group of MAiD providers from across the country. Join us in this safe space, ask questions, learn from colleagues and talk through your dilemmas. We re here to help each other as we navigate the uncharted waters of MAiD care in Canada. All providers welcome. Refer a colleague or join yourself. For more info us at : camap.office@gmail.com For all this news and more, explore our website at CamapCanada.ca!5

6 My Opinion: Ellen Wiebe CATHOLIC HOSPITALS REFUSING TO PROVIDE MAID I have had five patients in Catholic hospitals and one in a Catholic care home who were refused access to assessments or provision of MAiD. One lost capacity before I could help her, one was transferred to another hospital for MAiD and suffered greatly from that transfer (see article), one was transferred home for the procedure and three were transferred to my clinic for the procedure. There are 110 hospitals and health care facilities affiliated with the Catholic Health Alliance of Canada (CHAC). The Catholic hospitals have a policy to transfer patients to other facilities, not only for the assisted death, but also for the two assessments to determine eligibility for medical assistance in dying (MAiD). Daphne Gilbert, Associate Professor of law, University of Ottawa, said the following in a Globe and Mail article, Catholic hospitals, which are publicly funded, take the position that as institutions they have religious rights under the Charter of Rights and Freedoms. This position was recognized by some Supreme Court judges in a 2015 case known as Loyola High School v Quebec. Three judges concluded that a religious institution, as a collective, could claim a right to freedom of religion under Section 2(a) of the Charter. However, the three judges added a key caveat to this conclusion: an organization meets the requirements for s. 2(a) protection if (1) it is constituted primarily for religious purposes, and (2) its operation accords with these religious purposes. Publicly funded hospitals do not satisfy this test and therefore have no claim to freedom of religion. While an individual physician may have a Charter-protected religious right to ask another doctor to take over the role of ending a life, a hospital has no constitutional right to prohibit all its physicians from doing so. Hospitals have no conscience, only the people who work in them do. Canadians rights to legal medical services, including assisted death, must not be blocked or interfered with by faith-based medical institutions. Transferring patients for discussion, assessment and provision of assisted death may cause harm and suffering to those patients. Only individual physicians may refuse this care and only if providing adequate information and an effective referral is provided. We must call on the government to ensure that all publicly funded medical facilities respect patients rights to information, assessment and provision of MAiD. Ellen Wiebe Vancouver, BC!6

7 Case Study: What s Your Opinion? What s Your Opinion is a hypothetical case study. Although some details are taken from actual cases, names and details are fictionalized and changed, sometimes blended from more than one case so that they are not real and not identifiable. The purpose of this column is to consider interesting or challenging situations and spark discussion about what might or might not be appropriate in similar situations. This is meant to be a learning tool for assessors and providers. Tom is a 69 year old single man who was diagnosed with bladder cancer 2 years ago. At the time of diagnosis he was heavily into alternative treatments and declined active treatment, preferring instead to go see the world, soak in some hot springs and bring health into my life. He left the country soon after and reappeared eleven months later with more symptoms. He again declined suggested treatment and went to stay with friends for another 12 months. Two years after the initial diagnosis Tom accepted treatment and underwent 5 rounds of chemotherapy but felt so unwell that he declined any further chemotherapy and also any radiation therapy. 7 months later Tom presented to hospital with a significant myocardial infarction. He had lost 35 pounds since diagnosis, was incontinent, was having hematuria and tests showed impaired renal function. He complained of abdominal pains and fatigue. He was somewhat reluctantly convinced to transfer to a larger medical centre where he underwent angioplasty and had multiple stents placed. Medication post treatment for his cardiac condition caused an increase in bleeding and he spent 3 weeks in hospital being stabilized. It was during this hospitalization that he requested MAiD, expressing significant regret for having agreed to treatment for his MI and asking to die. Q: When considering whether the patient meets eligibility for MAiD, what other information would you like to obtain? Where will you get that information? How relevant is his initial refusal of treatment? How about his recent acceptance of treatment? Does either decision play a role in his eligibility? You meet with Tom for 90 minutes and he relays his story to you. He has no family, few friends and is proud to tell you he has never held a job in his life. He has no money and no place to live. He would like MAiD as soon as possible. Q: Is Tom s financial situation relevant to his eligibility? You have spoken to his oncologist who tells you he feels frustrated that Tom didn't treat his disease when he first presented, explaining to you that it was likely curable disease at that time. He is not comfortable with Tom s request for MAiD but quite likes Tom, is willing to see him again to reassess his current health and his treatment options. Tom refuses to see either the oncologist or the urologist, stating he will not accept any more medical treatments of any kind and is unwilling to!7

8 undergo any more tests. He has a properly witnessed MAiD request filled out and assessor forms filled out by the internist who cared for him during his most recent hospitalization. He is wondering why this process is taking so long. The hospital social worker has arranged for him stay in an apartment for the week and his payment is due if he is to extend for longer. He has no money and is not sure where he will go after the week is up. He d like MAiD this week. You locate and review his medical records. Regarding his cancer there is nothing documented since his refusal of further chemo or radiotherapy 8-9 months ago. His latest CT scan (several months ago) suggested localized bladder muscle invasion by the tumour but no spread beyond that. When pressed for an answer, his oncologist is willing to document that although he does not know Tom s current staging, if he were to continue to refuse all treatment his disease would likely continue to progress and it would be reasonable to think his prognosis would be less than 2 years. In the meantime Tom has moved in with a friend. He is complaining of increasing weakness, inability to walk more than 15 minutes without fatigue, incontinence requiring diapering which he detests and increasing abdominal pains. Q: Does Tom qualify for MAiD? Is he suffering intolerably? Does he meet criteria for suffering from a grievous and irremediable condition (is he in an advanced state of decline? Is it irreversible? Is his death in the foreseeable future?) If you were the provider, would you proceed with MAiD? Why or why not? Write us your opinion at: camap.office@gmail.com See a summary of responses in our next newsletter!8

9 CROSS-CANADA CHECK UP: - British Columbia IMPLEMENTING MEDICAL ASSISTANCE IN DYING LEGISLATION IN BRITISH COLUMBIA The work of developing a system where eligible citizens of BC can gain access to Medical Assistance in Dying (MAiD) began in the spring of The Ministry of Health set up a Provincial Working Group on MAiD and invited representatives from the five health authorities along with the colleges of physicians and surgeons, pharmacists and nurses. Work had already begun by the provincial Medical Quality Improvement Committee on developing non- core privileges criteria for physicians wishing to provide MAiD. Guided by some excellent work by the Alberta Health Services and international experience to date, provincial working group developed subcommittees on Pharmacy and Nursing to develop comprehensive multidisciplinary program. The most important goal of the working group was to ensure a standardized interpretation of Bill C-14 and to collaborate in developing common tools, assessments and support for providers of MAiD. As a result, a common set of documents including medication protocols were developed and provided to all BC Health Authorities. The provincial oversight was delegated to the BC coroner s office that would collect all documents following a MAiD procedure. A list of quality indicators were created that would be easily collected from data submitted. Any aberration in practitioner performance will be forward to the appropriate regulatory body for review. The Health authorities designated physician and administrative leadership to help implement the MAiD program and sent surveys to their practitioners both in the facilities and in communities. There has been variable interest expressed to date and a small group of providers are performing most of the assessments and provision of MAiD in the province. MAiD provision in facilities and community require allied health staff to support the provider. Education for all staff has been developed and distributed prior to requests of MAiD at these sites. All Health Authorities have a MAiD care coordination centre (MCCC) that will receive requests from patients and help to coordinate the provider and support staff as well as the site for the procedure. Current challenges in BC include: Need to recruit more providers, especially finding ways to provide MAiD in rural and remote sites, developing adequate funding schemes for providers for the delivery of MAiD and travel to remote sites, working with faith based facilities and conscientious objectors to allow assessments and provision of MAiD. Ongoing discussions and consultations are in process to help resolve these issues. Grace Park!9

10 - Manitoba PROVINCIAL MAiD CLINICAL TEAM The Manitoba provincial MAID clinical team was an initiative of the provincial government including health, justice, the five regional health authorities and the four medical professional colleges (physician, nursing, social work & pharmacy). The team originally consisted of three physicians, two nurses, two social workers, two pharmacists and one speech language pathologist who have developed expertise in medical assistance in dying. Due to increasing workload the team has been expanded with the additional of four more physicians (including 2 bilingual and 2 rurally-based physicians) and a third social worker all of whom are receiving training from the original team members. The team provides consultation (and education) regarding medical assistance in dying to all regions in the province. The provincial MAID team s approach is multidisciplinary with a nurse and social worker participating in all assessments and procedures. If communication issues are identified the speech language pathologist is consulted to assess and assist with communication. At present all requests for MAID within the regional health authority (RHA) facilities are being referred to and completed by the provincial MAID clinical team. Going forward the provision of MAID will be a credentialed procedure (requiring completion of an educational program) within all RHA facilities. The plan is for each RHA to develop individual MAID teams +/- provider networks who will be trained by the current provincial MAID team. Ideally these teams/networks will also be multidisciplinary a model strongly supported by the province and various medical professional colleges. Outside of the RHAs physicians are being advised to consult the MAID team regarding any request but are not technically required to do so. To our knowledge, there have not yet been any requests for MAID outside of the RHAs. In an attempt to standardize practice across the province there is ongoing dialogue with the College of Physicians and College of Pharmacy to consider a mandatory standard of practice +/- educational program and/or standardized medication protocol. Of note the provincial MAID team is currently only offering an IV based medication protocol due to concerns that the oral medications available in Canada are suboptimal. The team uses a standardized prescription and pre-made kits that contain all the supplies & medications required for the procedure. The kits are dispensed from a single hospital-based pharmacy in Winnipeg. As per the office of the Chief Medical Examiner MAID is not a reportable death in Manitoba and providers have been instructed to complete death certificates with cause of death as the underlying disease, manner of death as natural and MAID as a procedure. The provincial government has amended both the Fatalities & Vital Statistics Acts to reflect this. At present the provincial MAID team is collecting data regarding requests for (and outcomes of) MAID. A separate, masked electronic medical record has been created for use by the MAID team. The province is developing an advisory/oversight body that will be responsible for monitoring and evaluating MAID within the province. Kim Wiebe!10

11 - New Brunswick MAiD IN NEW BRUNSWICK When the Carter Decision first came down, the New Brunswick Medical Society struck a committee to develop legal/ethical guidelines. I was part of that committee and we really worked hard and did our homework and came up with a good framework to institute MAiD. Come to find out, six months later, the government directed the two RHAs to each create their own guidelines. No one was informed of the process and they did not want input from the Medical Society. Last spring, the hospital authority I work in sent an asking who would participate in MAiD. I responded yes, and was invited to a meeting. It was about an hour discussion with some input from the 6 physicians who were willing to participate in MAiD. Subsequent to that meeting, a draft policy was circulated to the same physicians (no clue who came up with the policy) for suggestions, not approval. June came and went and I heard nothing more. Until I went to the CMA MAiD course in early November, I had heard nothing about any policies or procedures actually being done in NB. At the meeting I met a colleague from NB who informed me there had been a procedure done. My first reaction was how did she know what to do, what forms were used, was there a drug kit etc. It turns out that 4 procedures were done, and what was being used was the current draft policy which was now in its 10 th revision, and still not officially approved. I wondered why I was not sent any of the further drafts after the first one. Everything was a hush hush secret. I inquired at a staff meeting of my hospital what the status was of MAiD in NB, and no one had anything to say. CBC news posted an article Nov 7 that pointed out that New Brunswick was not disclosing the number of procedures that had occurred in NB, claiming it was a privacy issue. Even Dr. Schollenberg, registrar of NB College of Physicians and Surgeons pointed out that a number is not a privacy concern. The article went on to point out that although directives have been drafted, nothing has been officially approved. Is there another province that after all these months does not have anything approved? As for information that the public or physicians can access, this too is in short supply. There is an 800 number that providers can call with questions, but no one knows about it (in fact only 2 calls to date). As for patients, there has been no notice or discussion anywhere how they can access information. It seems to me a deliberate attempt to stall the process. Out of sight, out of mind? But I am biased. The tragedy is that in the end it is the patient who suffers and continues to suffer intolerably. Fran Alborg (this article has not been updated since December 2016)!11

12 - Newfoundland FIRST MAID CASE IN NL See One Do One Teach One How does the medical community respond to new legislation? Medicine is an ever-changing landscape and thankfully the medical community is filled with innovators and early adopters. Medical Assistance in Dying was legislated for without effective support or guidance from all of our colleges. Doctors must navigate their own moral comfort along with procedural competence, barriers imposed by individuals or groups, and fear of litigation. When someone requests MAiD and there are no providers how do we ensure a patient s needs are met? For now at least, it appears that physicians are doing their best on a case by case basis that varies by town, health authority and province. I was asked in May 2016 to support a patient with assisted dying in Newfoundland where there were not yet any providers. Delays in my licensure meant that this patient died while waiting. Another patient requested assistance in October. There were still no providers. My role was to be limited. I committed time, I travelled from Ontario. The majority of the logistical work was done locally. The team of doctors coordinated, the pharmacies and EMR team collaborated. Coverage for medications was secured. A peaceful death ensued as the culmination of planning and commitment by local individuals. The patients gracious family allowed a team of 6 doctors to observe the procedure in the hope that they acquire the confidence to provide in the future. The procedure isn t difficult; the planning may be cumbersome but with time becomes easier. MAiD will become more streamlined. In the future there will be more support. Until then we need to be supportive of each other, be innovators and lead by example. Each time we respect a patient s wishes and their right to access this care we pave the way for our colleagues to provide their patients with a full scope of options for end of life care. Dr Marie-Clare Hopwood Toronto, Ontario!12

13 NL UPDATE: Things are progressing slow but steadily with good support from the health authorities now, and from various physician groups. The Nurse Practitioners are drafting standards of practice and will likely be able to administer MAiD soon. Some of the faith-based long term care facilities have indicated they do not wish MAiD to occur within their facilities- so we are trying to work out alternate arrangements. Other faith based long term care facilities have not yet declared their position. We shall wait and see. Provincial government has been quite supportive, but no reporting legislation yet- they say they are waiting on the federal legislation. This is not good enough. Not reportable to the Coroner. There is talk about creating a provincial MAiD Coordinator position to help establish the protocols and policies for all 4 of our health authorities. No billing codes yet for MAiD in Newfoundland but it s in the works. As far as I know there have been 5 completed cases, and 2 that requested, but died before they could be assisted. Aaron McKinn & Francois De Wet!13

14 - Ontario MEDICAL AID IN DYING IN ONTARIO Based on the data released by the Ministry of Health and Long-Term Care (MOHLTC), as of December of 2016, 160 eligible patients in Ontario have received MAiD services. The College Of Physicians and Surgeons of Ontario has established an advisory service for physicians who have questions around MAiD professional guidelines, obligations, or the process of provision. Physicians can call the advisory line for assistance at Ext.606. Any physician willing to participate can be a MAiD provider. As of June 6 th 2016, MOHLTC has established a toll-free referral support line ( ) to help physicians and nurse practitioners arrange for assessment referrals and consultations for patients requesting MAiD. There is a database of registered MAiD provider clinicians who will receive these referrals and will step in if the patient's own physician is not willing or able to provide MAiD. Some hospitals have created a team of physicians and allied health who will look after all MAiD cases for that particular hospital. In some hospitals, all physicians participate in MAiD and those who choose not to participate are required to refer to another physician. MAiD in Ontario is provided in variety of settings including the patient's home, palliative care units, acute care hospitals, etc. In the community, physicians collaborate with Community Care Access Centres who assist in providing nursing care and ordering equipments and supplies including supplies needed to obtain peripheral intravenous access. The transfer of a patient from one setting to another could create obstacles for receiving MAiD as different organizations follow different internal guidelines. Some organizations require their own physicians to have done the eligibility assessment even if the patient has already been assessed by other physicians. This could delay access to MAiD and also burden the patient with having to go through multiple assessments. Not every pharmacy is willing to dispense medications for MAiD. The MAiD provider needs to find pharmacies who are willing to dispense the medication. Pharmacies usually release the medications directly to the physicians and required the physicians to return the unused medication back to the pharmacy. Some pharmacies may ask 5-7 days of advanced notice in order to prepare medications. The drugs and services required for medical assistance in dying is available at no cost to the patient. Currently the Coroners Act require that the coroner be notified of all MAiD deaths, but allow the coroner to determine whether to investigate the death. Our practice has been that we contact the coroner's office after completion of a MAiD Procedure. The coroner has a short telephone interview with the physician and a family member of the deceased. The physician is required to fax copies of patient's official MAiD request form, two MAiD eligibility assessments as well as procedure note, to coroner's office. The coroner reviews the documentation and if satisfied will issue the death certificate. Narges Khoshnood!14

15 Conference announcement!15