30 mai 2023
Aperçu régional : La mort et mourir dans l'Est du Canada
Webinaires | 30 juin 2021
Des cliniciens et des navigateurs de l'Île-du-Prince-Édouard, du Nouveau-Brunswick, de Terre-Neuve et de la Nouvelle-Écosse se sont joints à nous pour discuter de divers sujets entourant la mort et le décès dans l'Est du Canada.
Voici quelques-uns des principaux aspects abordés :
- Attitudes générales envers la mort et le décès
- Ressources et soutien en matière de soins palliatifs
- Informations sur aide médicale à mourir (AMM).
Conseil : nous avons mis en ligne des timestampes afin que vous puissiez accéder directement aux questions et réponses qui vous intéressent le plus. Il suffit de sélectionner "Regarder sur YouTube" ci-dessus et de lire la description sous la vidéo.
En juin 2021, nous avons organisé un webinaire sur le thème de la mort et de l'agonie dans les pays d'Europe centrale et orientale. Eastern Canada. La conversation a porté sur les attitudes générales à l'égard de la mort et du décès, sur les ressources et le soutien en matière de soins palliatifs, ainsi que sur l'accès à l'information et à la formation., et des informations sur aide médicale à mourir.
Ce billet de blog mettra en évidence les principaux points à retenir du webinaire, ou vousvous pouvez regarder l'enregistrement l'enregistrement complet ici.
Le Dr Aaron McKim a une pratique privée et travaille dans le domaine des soins de longue durée à Terre-Neuve. Il est membre du corps enseignant de la faculté de médecine de l'Université Memorial et a participé à l'infrastructure provinciale AMM .
- Nicole Phinney est une infirmière navigatrice AMM pour Nova Scotia Health. Elle participe à la coordination, à l'enseignement et au développement du programme AMM pour la province de la Nouvelle-Écosse.
- John McCarthy est le conseiller en affaires médicales de l'AMM pour la Nouvelle-Écosse.
- La Dre Megan Miller est la responsable du recrutement des médecins pour la Medical Society of P.E.I. et concentre sa pratique clinique sur la prestation du service AMM dans la province.
- Le Dr Fran Alborg est une évaluatrice et une fournisseuse du site AMM au Nouveau-Brunswick. Elle est membre de la Canadian Association of AMM Assessors and Providers (CAMAP) et a été membre du conseil consultatif clinique de Dying With Dignity Canada.
Attitudes générales concernant la mort, le décès et AMM dans l'Est du Canada
- Sur toute la côte est, les attitudes et les conversations sur la mort et le décès varient. Dans une certaine mesure, les communautés rurales ont moins accès à l'information et peuvent être plus réticentes à avoir des discussions sur les soins de fin de vie. De nombreux patients hésitent à aborder la question des soins de fin de vie avec leur médecin.
- Tous les panélistes ont convenu que l'éducation et l'accès à l'information sont des facteurs clés pour élargir la compréhension des options de fin de vie et inviter à la conversation sur le sujet.
- La promotion de la planification préalable des soins a été mentionnée par tous les panélistes comme une bonne façon de lancer la conversation et de permettre aux patients de commencer à réfléchir à leurs soins de fin de vie.
- La désinformation au sujet de AMM est courante sur la côte Est auprès de certains patients et de certains médecins. Toutes les provinces pourraient bénéficier de coordonnateurs centralisés du site AMM , de ressources pour les patients et de possibilités de formation pour les prestataires de soins de santé.
- Le Dr McKim a participé à l'élaboration d'outils d'enseignement en ligne pour le site AMM à Terre-Neuve, mais ce financement a été annulé, et les outils sont maintenant désuets.
- En Nouvelle-Écosse, un projet de recherche sur l'expérience du processus AMM est en cours. L'objectif est de mieux comprendre les besoins des personnes qui ont vécu un décès à AMM .
AMM statistiques et ressources par province
AMM Les décès dans la province des Maritimes représentent 1 à 1,5 % de tous les décès, soit un peu moins que la moyenne nationale de 2 à 2,5 %.
- De 2016 à 2019, plus de 100 décès ont été enregistrés sur le site AMM .
- AMM des coordinateurs dans chaque région.
- Le don d'organes n'est actuellement pas une option en cas de décès sur le site AMM .
- Depuis 2016, il y a eu 1300 renvois et 600 décès AMM .
- Système d'orientation central par l'intermédiaire de la Nova Scotia Health Authority.
- Le don d'organes peut être organisé lors d'un décès sur AMM si certains critères sont remplis.
- De 2016 à 2019, 31 décès ont été enregistrés sur AMM (données probablement faussement faibles). Maintenant, avec la déclaration à Santé Canada, les données devraient être plus précises à partir de 2020.
- Au moment du webinaire, l'Î.-P.-É. ne disposait d'aucune infrastructure pour l'aiguillage vers AMM . Les patients peuvent obtenir des informations sur AMM par l'intermédiaire de leur médecin de famille ou en appelant le 811. Le Dr Miller participe actuellement à une proposition visant à mettre en place un système à l'Île-du-Prince-Édouard.
- De 2016 à 2019, 265 décès ont été enregistrés sur le site AMM .
- Au moment du webinaire, le Nouveau-Brunswick n'avait pas d'infrastructure pour l'aiguillage vers AMM . Les patients peuvent obtenir des renseignements sur AMM par l'entremise de leur médecin de famille ou en composant le 811.
- Le don d'organes peut être organisé avec un décès sur AMM .
Note : MDDC dispose d'une ressource actualisée sur le site web pour naviguer dans une demande de AMM avec des informations régionales.
Today is the first webinar as part of our Regional Spotlight series. So we’re beginning with Eastern Canada and we will be making our way across the country. Joining us today is Dr. Aaron McKim certified palliative care instructor with Pallium Canada and Eastern Regional Health Authorities, Medical Director for MAID, also joining us is Dr. Fran Alborg MAID provider and member of the Canadian Association of MAID Assessors and Providers.
We also have Nicole Phinney she is with us and she is the MAID nurse navigator for Nova Scotia Health. And does MAID coordination, teaching and program development for the province of Nova Scotia. Then we have Dr. Megan Miller. She is the chief physician recruiter for the Medical Society of PEI and her clinical practice focuses on the delivery of MAID services in the province. Finally, John McCarthy, who has been the MAID Medical Affairs Advisor for Nova Scotia since 2017.
So thank you all for joining us. And I will now pass it over to Kelsey going to get us started with today’s discussion.
Thanks, Nicole. And thanks everyone for joining this afternoon. We’re so glad to have you and to have our wonderful presenters with us to share some information and insight into what’s going on, on the East coast of Canada. So to get us started we just wanted to ask our panelists here. What inspired you to get involved in the field? Some of you are MAID providers and assessors, other are working in navigation roles to help people with their end of life choice. So maybe we can start with you Fran. What interested you in getting involved with MAID and end of life care?
Well, that’s kind of really kind of an interesting question because it just seemed, I didn’t really make a decision. It was just natural evolution. As a physician I’ve always believed in, it’s a teamwork and people are the ones that actually have the right to make their own decisions and anything that’s available irregardless of what my morals or religion would be. Maybe it’s part of my personality. I was on the streets parading for abortion rights back in the sixties. So I’m dating myself, but as far as being a doctor, it’s not just about treating, curing, you can never cure, you want to keep comfort and always give comfort and sometimes comfort is end to life.
Thank you so much, Fran. Nicole, would you like to go next?
Oh, yeah. So a few years before this role, I worked in palliative care. And so I got to see people access MAID in that setting and see the peace that it gave them and the beauty of them being able to plan out their death. And it was that aspect that really drew me to this role.
Thank you. Aaron?
I did get involved with MAID back before the legislation actually changed and I’ve been involved with long-term care for quite some time. And at the time I was the clinical chief for long-term care. And so I needed to take a role to make sure I understood all the ins and outs. Because I figured given the population in long-term care, they’re probably going to be some requests for MAID. So when the time came, I wanted to be able to back up the physicians that I was working with and be able to provide them a good framework so that they could feel they could do it safely and with confidence.
And then when the legislation changed, it seemed in Newfoundland, at least there was nobody willing to step up to the plate to actually be an assessor or a provider. So I figured I was well positioned even though I didn’t necessarily want to be the guy to do it all, but I was probably in a good position knowing some of the workings of the regional health authority in the system and the way that that worked and also in long-term care and family medicine, having understanding of the role that MAID really needed to play in some cases and allowing people to have the choice.
And at that time also we had a very dear family pet that passed away and we were able to have the vet come to the house and it was really a good experience. It was hard, but it was right. And my kids were able to participate in that and learn and get a framework for end of life and start to understand what the role that that is. And it seemed to me a real shame that we could provide this for our pets, but we couldn’t offer the same kind of mercy for our elders. That just didn’t make sense. So I really decided it was worthwhile devoting the time and the effort in to try to make this a more feasible system to implement in this region.
Okay. Thank you. Megan?
Hi, everyone. Thanks so much for having me. I like the other panelists fundamentally believed in Canadians rights for medical assistance in dying and was following it prior to the legislation coming into play in 2016. So it’s something that I felt strongly about and probably like other physicians, and I can relate with what Aaron said. When the legislation came out across Canada and we were looking at this in PEI there weren’t very many people that stepped forward to do the work.
And I think it wasn’t because there wasn’t good support for it amongst our physician colleagues but a workload issue because many people are doing this as best they can off the sides of their desks. And so I feel like it was more around that. At the time that the legislation came into play in 2016, I was working as a palliative care physician at the provincial cancer treatment center.
And so naturally we know the data around the types of illnesses that will cause people to look at wanting to pursue medical assistance in dying and cancer would be the bigger one. And so we started to have requests and I remember very distinctly my first patient who asked me about this and at the time it was very early days and our direction was to call a provincial 811 number for more information. And this lady had been a metastatic breast cancer patient in our clinic for more than 14 years. And she was a dynamo lady and she looked at me and she said, but you guys are my family and I’m asking you to help me with this.
And so at that moment I thought you’re absolutely right 811 felt very uncomfortable to me. And so I happily threw my hat in the ring despite feeling a lot of work pressure and living with three little children and a husband who’s also a physician. So a busy lifestyle to be adding more into it, but it’s been the most rewarding work above and beyond palliative care for sure for me.
And so it’s my clinical passion and something that I feel really strongly about. And I would say the palliative care piece also has entered into this for me. I feel strongly that this can be and should be a part of a palliative care practice. And so I look at this as an important way to say, I’m a palliative care physician who can help people die in any way that they choose, and I’m here to support what’s best for the patients.
Thanks, Megan. And Thank you for sharing that beautiful story about your patient from the earlier days of MAID that’s pretty special to hear that. And John, you’re up?
Hi there and thanks for the opportunity to take part in this panel. And in relationship to my interest in the MAID, some of my earliest memories from childhood involve a death and dying. Seeing relatives go through illnesses of varying kinds. And in a lot of cases, there was a lot of cancer in my family. And the Sue Rodriguez case also spoke to me very much here in the early nineties. And I’ve always been a big proponent of patient choice for medically assisted death. And so when the opportunity arose for me to get involved back in 2017, I took it right away. It’s been a very interesting journey here in Nova Scotia to see how things have evolved and it very much fits with personal values. So.
Thank you all for sharing. It’s fascinating to hear some similarities with palliative care backgrounds and some threads that you share with advocating for other choice related medical options. So I think everyone appreciates getting a bit of background about what drew you to this area of healthcare. So thank you for that.
So the next couple questions are a bit broader just related to conversations about death and dying maybe MAID but not necessarily specific to MAID. And what you found in your communities over the last five years, 10 years, et cetera, is death often talked about in your region? Are there open conversations that are happening? If you’re seeing patients, are people leaning towards having open conversations about end of life choice or end of life experiences or is it a little more of a touchy subject and maybe Megan, would you like to get us started with that?
Sure. So I feel like perhaps I have a bit of a skewed perspective on this because working in palliative care at the cancer center this was a big part of my day-to-day work and our patients, many of them could have palliative diagnoses by definition, by the time that they were diagnosed. And so in that kind of a specialized setting, we were quite immersed in having these kinds of conversations. I definitely see a progression in our ability to do that and tackle items like advanced care planning in a more open and perhaps an earlier way.
So we certainly made strides, but it was definitely part of the work that we were doing in that very specialized center. I think from having done general palliative care in the community before I would have a different perspective on that. And that would be that sometimes these discussions weren’t had until a palliative care referral was made. And so we definitely saw work that needed to be done in those more general kinds of settings.
And it’s just really wonderful to see this as being a more open conversation to discuss. And I think the addition of medical assistance in dying has taken it to the next level, because really in the cancer center, we have been very clear that any end of life care discussion should include also a discussion about medical assistance in dying for those who want more information. And that was a bit of a challenge to get that piece in place early on. There was some fear for allied health or even from other physicians is this inciting medical assistance in dying to be bringing it up? Is it encouraging someone to do it? So there was a lot of education that was required in those early days around that piece.
Okay. And Nicole and John, any insight into thoughts and conversations about death and dying and their disclosure.
It was interesting hearing what you were saying Megan because I worked in the cancer clinic also mostly with palliative patients, so the brain tumor and lung cancer population, and I still found people really hesitant to talk about it. And I often felt like kind of the bad guy bringing it up and trying to initiate those conversations. And so that was real part of my practice at the cancer center was trying to get all the nursing staff and physicians on board with bringing up those conversations a bit earlier. But again, working in palliative care before that it was your day-to-day, which was really nice.
So I think, like you said, things are changing, but it’s still a lot of work to do. But that was what kind of drew me to this role too was an opportunity to talk frankly about end of life planning because it’s a little bit different than palliative care where people are referred but MAID people are specifically asking about it. So you know they want to have the conversation on some level. And so that’s been really rewarding.
Yeah. There’s certainly an apparent revolution, I guess in the discussion around the death and dying for sure obviously since MAID became available in 2016, but I remember as a child, when again, relating back to my earlier point on seeing several relatives suffer at the end of their lives, even when they were at that point discussions around death were almost verboten. They didn’t want to go there, didn’t want to have the conversations. And now I think people speak certainly in my experience at least much more freely. And that again is kind of in the evolution of the conversations that we have around death. I’ve been very, very appropriately. So.
So in New Brunswick, the first year things were legal, 2016 was like a big secret. Nobody knew how, when, where, or what, even the physicians, even though I said I would be a provider, no information, nobody wanted to talk about it. So as time progressed, things have gotten logically more open with high profile pieces, but in general about death and dying where we’re all. And I imagine all the other provinces here represented are also very well.
So people are historically, we’re used seeing deaths and farm animals in and giving birth and then dying from that. And as we’ve gotten more urbanized, they’re not so aware of it. And I think there’s been a transition where they don’t want to talk about death, whereas before it was an everyday thing on the farm. So we don’t have a palliative care person here. So as part of my family practice and we call it extra mural here, I did some palliative care training and did that and that about so for the last 10 years, I became acutely aware of the need for advanced care planning, not just in life, but advanced care planning.
So instituted that anybody over seventy, I asked to do advanced care planning. I got about 4,000 people in my practice and I maybe got like five back. So there’s still some resistance to face it until you really have to.
Very interesting. Thanks, Fran. And Aaron?
Yeah. I think there’s a lot of hold over from a years ago especially in Newfoundland where if you were going to die there wasn’t much you could probably do about it. So why bring it up? And it was just a depressing subject to talk about. There’s still a lot of that kind of mentality that people have. But I agree that the advanced care planning is something that’s really important to bring people up for patients and particularly for their families to start to consider the inevitability of it.
And I think our whole medical system really portrays death almost as an option that no you can have a heart attack or you can prevent it with the operation. You can have kidney failure or you can prevent it with dialysis and there’s all these sort of options and death is in many ways seen as a sort of a failure of the medical system rather than an inevitability and working in long-term care level three long-term care, you see a lot of people that live well past when they probably wanted to.
I mean, my grandmother, when she got towards the end of her life she’d wake up in the morning and say, well, what good am I to anybody? What’s the point of all this. And she would almost wish for the end to come, but then it wouldn’t. And it was a frustration for her. So I think there’s a lot of reticence to talk about it. There’s also, I think in some of the professions particularly in nursing and social work, excuse me, there’s a sense that you shouldn’t really bring it up that in the standards of practice currently in Newfoundland they tell social workers and nurses that they’re not allowed to mention MAID unless the patient specifically asks about it and which they can’t, if they don’t know about it.
So we have a lot of nurses and social workers who are scared to even breathe the word for fear of being censored by their professional organizations. So getting around that is a really an uphill battle. So we came up with a document to try to lay all the options out. To sort of get some input from the palliative care and from all the other groups. So we have a document that we were trying to circulate the docs about advanced care planning, talks about palliative care. It talks about MAID. It talks about organ donation and grief and bereavement services, and it’s all together in one document to try to help people get over that hump about, well, if I talk about MAID, am I encouraging the patient to do that?
And so I think that we need a little bit of a shift in our focus not just in terms of society and patients but also in terms of the medical community. In terms of how we bring these things up and our duty to inform people and that they can’t really make an informed decision unless they know all the options.
Sure. Great. Thank you, Aaron. So moving on and we’ve been touching on MAID throughout the session so far, which is great. I know we have a lot of people interested in hearing about MAID. But we do have some specific questions related to MAID in your provinces. So the first is related to the number of MAID deaths. And is it something that a lot of people are choosing in your province or is it still quite rare? Any information that you might have about that would be welcomed by the audience. Megan, did you want to get us started?
Sure. And Fran, I know has a side that she’s going to share as well. We’re a small province. Our population has just exceeded 160,000. And so the data that we have would be from 2016 to 2019, 31 MAID deaths, but we’ve discussed this as a group of colleagues here and we suspect that number is low and falsely low. Certainly many of the deaths that we would have had prior to the health Canada reporting legislation are probably not captured. So I would argue that that’s a low number. We don’t currently have someone provincially recording or keeping track of our own data. So now that we are reporting to health Canada, we are relying more so on that.
And then of course I suspect like many places we certainly see here that the number of assessments we do certainly outweighs the number of provisions that would end up happening. And so we see that as a big part of the bulk of the work here in PEI or even meeting people initially as an information session even prior to an official request and then going on to do assessments.
Okay. Fran? Oh, you muted Fran.
I’ve done this enough. I should know better. So if you want, I could share a slide or I could just talk about it. Basically, in New Brunswick between 2016 and 2019, there were 265 deaths. Each year, consecutively did more and more. And so naturally it’s about 2% of guests. It’s not just nationally, but internationally. And in the Maritimes, it’s a one to one and a half percent. And interestingly as we go West, and this is where it gets more and more higher percentages. And of the people that do ask for MAID at least well, I guess this is all down there 20% don’t do it because multiple reasons they don’t go through with it. And that’s pretty much what’s going on in my neck of the woods.
Thanks Fran. Aaron?
Sure. Hold on just a second here. Bear with me. I’m trying to get this screen back up here. Here we go. So in 2016, I think we had three cases and then after that we went up to about 16 for the following year and 23 after that. And I think just before Christmas this year Newfoundland passed the hundred case mark. But we’re still quite low in terms of percentages compared to the rest of Canada. So I think the average has gone up around two and a half percent of deaths across Canada. And we’re about a bit less than half of that. But it is steadily increasing as time goes.
And we’ve been trying to figure out why are our rates so much lower than the rest of Canada? And I think largely it’s an awareness thing by both the patients and the physicians. But it’s a hard thing to get the discussions going around because it’s not something you can really, I guess, market in a traditional sense. It’s really all of the end of life options have to be kind of presented holis, bolus. But it’s been getting a bit easier lately. There’s been a lot more providers willing to enter into this. And I think that really is dependent on having kind of an infrastructure put in place to support physicians and nurse practitioners, so that they feel that they’re not kind of out on their own vulnerable, but that they’ve got this kind of this group behind them who can kind of help them and hold their hand and give them the information.
And so that’s been a long time in trying to build it and it’s an easy thing to fall apart. I mean, recently we’ve had some accredited in online teaching modules about MAID that now the government has not funded to be renewed. so now we don’t have any online teaching modules anymore. And the online information that when I was part of the department of health and community services, I was tasked with trying to build these things. So I built them and now I’m no longer in that role and they’re all out of date now since C7 has come out. So it’s really hard keeping all the pieces going.
So I’m worried right now at least a Newfoundland that some of our supports and some of our infrastructure are kind of going by the wayside and despite our best efforts government doesn’t seem to be either willing or able to support in renewing that.
That’s very interesting. Thanks for sharing that with us, Aaron, and giving us a bit of a sense of some of those complications that you’re experiencing as well. Nicole and or John, do you want to talk a bit about what’s going on in Nova Scotia?
Yeah. Yeah. There are numbers here. So we’ve had the 1300 referrals since 2016 and about 600 have actually gone through with MAID. So about half and those numbers have been increasing every year. So for instance, 2020, we were at 373 referrals, 165 deaths. And we’re definitely going to surpass that this year and running into similar issues just with infrastructure and having a program. My role is new to Nova Scotia as of September of 2019. And we’re hopefully going to have additional supports at some point but similar to the rest of you guys, I think we’re all requesting more resources.
Thanks, Nicole. The next question ties into a bit of what you were talking about Aaron about just education and awareness about MAID and what MAID means and who can access it and that kind of thing. So what are some common misconceptions about MAID that you’re hearing, and it could be about what’s in the law or regarding eligibility or perhaps the process and what’s required for somebody to access MAID but just anything that you’re hearing that’s been sort of standing out over the last number of years. Aaron, did you want to start?
There’s a real spectrum of things. I think there’s a real spectrum of perspectives. And some people think that they can get MAID any time for any reason whatsoever. And they don’t realize there’s these criteria that you have to meet. And then a lot of people aren’t even aware that it’s an option. And there’s still a lot of misconception of what even what palliative care means that some people think it’s just the last day of your life, you go in and get a shot of morphine. That’s what palliative care is. They don’t realize it’s sort of a full kind of spectrum and much earlier overlap with treatments and palliation. So I think that there’s a lot of misinformation too amongst physicians to think that somebody doesn’t meet the criteria.
If they have any bit of confusion, oh, no, they don’t have competency. When in fact they may very well be competent to make certain decisions. And I know there are a lot of physicians who confused imminent death with a reasonably foreseeable death. So that’s a another theme. And I think a lot of physicians, if they’re uncomfortable with it, they don’t know a lot about it. What’s to say, oh, no, no, you don’t meet the criteria, then they’re uncomfortable territory. So I think there’s a little bit of a bias that some docs have in terms of wanting to simplify it and justify that they don’t have to deal with that.
And that probably comes from a reticence and a reluctance because they don’t really know the ropes. I mean our medical society works a lot on a push system. Right? You push your work onto somebody else and you refer and then a lot of people become very good at protecting themselves from having work, pushed on them. The initial response, a lot of docs have, I think is oh, I don’t do that. That’s not my job. That’s somebody else. And then it’s often my role as the director to go back and talk to them and say, well, actually the patient better than just about anybody else. So maybe you’re in a better position to be an assessor. And would you consider given the supports, given this information, give me a call, if you have any questions, that sort of thing. And a lot of people will be willing to step up particularly for their own patients. If they feel they got that backup.
For sure. Yeah. That support and mentorship opportunities and that kind of thing that does sound like it’s quite important in the bigger picture of patient care. Megan, would you like to go next?
Sure. So I can definitely relate with my colleagues on the panel about resource issues. That’s certainly the case in PEI. And so our group, we actually have quite a good number of clinicians both nurse practitioners and physicians who are doing the work in some capacity, whether it’s assessments and provisions or perhaps, maybe people just wanting to be involved in the assessment piece. And we have physicians in all three of our geographical counties as they’re called in the province. So we feel really great about the participation from a clinician standpoint for the MAID service that we have, but we really don’t have a well-organized service or program.
And so, as I mentioned before, we’re a bunch of people who feel strongly about doing this work to the best of our ability but really working off the sides of our desks and doing it in addition to the other kinds of professional responsibilities we have. We’re working with government and we’ve submitted a business proposal for we’d love to have a 0.2 FTE program directors. So that would be a physician or a nurse practitioner who steps into that role. And we have also requested a 0.5 clinical coordinator. So that person, we would see as a central site for referrals to go in help with the organization, the paperwork between that person and the program director doing a lot of education.
So I guess all of that to say we’re really lacking in education, there was a big push on education in 2016 when this legislation first came out and there were town halls and meetings across the province to get clinicians and the general population aware of what was happening and what was coming down the pipe. But there has not been much done recently in that regard. And so we really see a huge need. We’ve struck a new medical assistance in dying advisory committee. And we’re making ongoing recommendations to government, but we submitted our business proposal just before COVID erupted.
And so like many things I’m sure folks can relate with across the country that became not a top priority for government. And so we’re looping back with them hoping that we can move forward because we see tons of need. And Aaron, I would just acknowledge what you’re saying, lots of clinicians who aren’t involved with MAID who I worry are telling patients they don’t qualify because it’s a lack of understanding of what the criteria are. So what I worry about is the patients who would potentially want to have this, or at least explore it as an option, but who are with the best of intention probably hearing from other clinicians, perhaps family, physician, or other people that they wouldn’t qualify.
And so then they stopped the process there. And what we’ve said all along is really the patients who are navigating our system tend to know how to do it really well. They tend to be well-educated or they have family members who are willing to go to bat for them. So we have seen instances where patients or families have kept going and saying, wait a second, we want another opinion. We’d like to talk to someone else. But I think that there are probably lots of vulnerable folks out there who are not getting adequate access to getting more information. And that’s what worries us. And that’s what’s driving us to push this forward.
Thanks, Megan. And it sounds like you have a lot of great initiatives in the works in PEI. So certainly hope that all works out and you get some responses on some of those proposals.
Thanks. Willing to.
Nicole and John?
In terms of the common misconception, the most common one that we seem to get is that people think they can have this the day that they ask for it. Not that there’s anything really in the law to say, that’s not the case anymore, but just resource wise, it’s not doable. So really trying to encourage and educate practitioners to let people know about MAID early on so that they gain and get their assessments done and have some time to think about [inaudible] versus when they’re a few days from their natural death to trying to organize everything. Because that often ends up causing a lot of stress for the patient and their family. And wondering if they’ll get the assessments done in time.
So that’s definitely the biggest misconception, but also that a lot of people who call because we’ve got any kind of a public phone line that people can call it myself and John manage and a lot of people will say I don’t think my family practitioner would be comfortable with this or be willing to talk about it. And then I can usually tell them yes, this is your family practitioner and they’ve made referrals before. I’d really encourage you to try to have that conversation. And so I think a lot of them are surprised that their practitioner is open to that discussion and not against it, particularly in some of the more rural areas, but then that’s part of my role too, is to advocate for them, if that conversation isn’t going anywhere and it’s clear that they probably wouldn’t be eligible. John, anything?
No. I was just going to echo what you said, Nicole, with regard to those who call and think that they can have MAID immediately. And they’re not aware of the process and the criteria that have to be met. And then just in general, the process that’s involved in terms of lining up those clinical folks to do the assessments and or the medications and whatnot. And so that’s certainly one that rings very true for me. And I have had some surprising conversations with physicians especially early on like 2017 when I first got involved where we’re in the physicians weren’t really aware of their requirements as described in their own college standards with regard to the fact that they have to play some role either in making referral for the patient or making that effective transfer of care to another clinician who would make that referral into us.
And in some cases they would just sort of plead ignorance and say, well, I wasn’t actually aware of that but in some cases I think we actually did have some folks who are just actively posed to meet and really not wanting to get involved at all. So Megan, to your point that it is a concern about those who aren’t big self-advocates who are fortunate enough to have family and friends perhaps to help them guide them through the navigate the systems out of there. And often, and do think about those who might perhaps actually fall through the cracks. We obviously don’t want to see that happen, but it’s probably a reality, I guess.
Thanks, John. And Fran. So as previously discussed, Aaron said, it’s the whole gamut of misconceptions. And the concerning thing I think is not misconceptions but lack of education, both from the patient’s point of view and from the physicians. I’ve had physicians that said, no, I’ll do it. And then they read it and they see criminal code. I want to do it. They don’t go any further. So it’s a huge, and in New Brunswick, there is no centralization, there’s no navigator, they call 811, we have two hospital regions and each one is done differently.
So is really chaotic here. So it’s the education that I think is all thing. Megan mentioned how good people are at navigating the system once they’re in it. Now, this is not necessarily in the report, but this is a statistic 85% of the people who have MAID are white, good income and good educated. So there’s some groups out there that really need to reaching out to.
Thanks, Fran. So the next question about MAID is related to individuals whose family member or friend had an assisted death. And what are you hearing from those folks afterwards about what was helpful for them, or maybe what wasn’t helpful as they navigated their grief? And this could be anticipatory grief before the person died with MAID or what they experienced afterwards. Have you heard any feedback about that from anyone? Maybe we’ll start with Nicole and John?
Sure. We’ve got some really interesting research happening in Nova Scotia, specifically around this. Recently, some researchers interviewed family members or loved ones or friends who were present for a MAID death to talk about what their experience was like throughout the MAID process. And these interviews were done months after the death occurred. So we’re going to have some really good data coming out around what these family members are feeling that they needed. Things that were done well. Things that weren’t done well and where the missing pieces were.
A lot of them gave some feedback saying that they found it really challenging after the death that they weren’t really prepared for the death part. They were really prepared for the MAID procedure, the giving of the medications and what that would look like but not so much what the body would look like afterwards. And the calling of the funeral home and all the stuff that comes after someone died.
And so that was a key piece but also people wanting peer support. So I’m meeting with other family members who have been a part of a made death and just being able to connect with people that have really understood. So I guess these aren’t necessarily things that people have said, yes, we’ve done this and it’s worked well, but these are some gaps that we now know need to be addressed.
Anything to add, John?
Not really, Nicole got it better there as well.
Okay thanks. Aaron?
Sure. I think that I really get a sense from patients and speaking with the families afterwards that I think it’s really helpful when a patient goes through the MAID process for the family and the loved ones to see the person there and fully understand that they’re making that choice. That they’re doing things on their terms. I think it helps a lot with acceptance and reconciling the situation for family members to see that patient is a willing participant. And that they’re really the ones in control. This is not something to be pushed on them. But they’re kind of going out on their own terms.
And I think that helps put it in a place it’s almost hard to put into words but it puts it in a place in people’s hearts where they can sort of accept it a little bit more and a little bit more readily. And I think it helps in the sort of the normalization of death. And back to the idea that death is a failure of the medical system and it’s as more a part of the processes birth or anything else. And I think there’s a lot of work to be done in our society in terms of normalizing the idea of aging and death. And it’s not something to be feared. Because I find a lot of the time in dying the patient themselves are often quite reconciled with the idea especially if they’ve been suffering for a while, but it’s their kids who have not yet gotten used to the idea. Who can’t quite get their head around accepting that their parent or loved one is not going to be around anymore.
And so I think it helps to see the willingness of that and the relief of the suffering. I was at a provision yesterday and the daughter said you could palpate… She was holding the patient’s hand. And she said, you could really feel just the easing of his pain, just the release of all that tension. And then he went into kind of a much more peaceful state as he left the world. And I think that really helped with the acceptance of the whole situation for them.
Thanks for sharing that Aaron. Fran?
So from my personal experience, I don’t have any, we’re not doing any data or anything but people are always just so grateful and they say, thank you, thank you, thank you. And in the beginning, it was really how to respond when people say are so grateful. Thank you for helping their person pass. Now, it would seem that with experience, you work that out. I think one of the other things is the fact that there was a study that shows the plan death helps a lot accepting the grief on the way to the date. It actually brings a light to the death.
There’s ways to kind of put it in and you have the active family planning. And the other thing is there is it’s not just a procedure, it’s a ceremony. And I did a provision on Indian reservation, which was very different from the French lady up North that had all her angel friends around. And for us, it’s very, very rewarding. And a lot of grateful. I don’t know about what Nicole said about after the death. I don’t know if anybody’s really prepared after the death. One thing I hear over and over again. And even the first time I saw did a procedure where I just watched was how quick it was. Nobody’s prepared how quick, within minutes, the person, okay, we’re going to start it now say your last goodbyes, but I think that’s a big piece.
Yeah, absolutely. That’s something that if we have folks reaching out to us who have questions about what it might look like, we of course encourage them to talk to their provider to get all the information. But that is one of the pieces that we’d like to mention is just how quickly the medications work because like you said, people are very shocked by how quickly the person is unresponsive. Megan?
I think lots of great points is already made. I think for us, what we have seen is in a small community like this one that is very close knit lots of really wonderful aspects to that. And I would say that in lacking right now in the resource to do better education generally to the public and also to our clinician group, we’re sort of building knowledge. One case at a time because of course when there is a MAID death then you’re educating the close family and loved ones around that person. And that information feeds out into the community.
And we had an interesting experience recently that was fairly widely publicized in Canada, but we had a couple who died of MAID here a few weeks ago. And on the morning that that news story came out and kudos to the family who felt very strongly about telling their story and really felt like they had a responsibility to share what happened. I had another made provision on the morning, the story came out and that was such a huge comfort for the son of the patient who was having MAID on that day. He said reading the story and understanding the perspective of that family allowed him to tackle what was happening to his family that day in a much more meaningful way. And that was really impactful.
So we’ve had some good situations where people have felt very strongly about sharing their story publicly. And I would say that’s really impactful than media contacting a clinician to talk about what it’s like to do the work.
Thanks for that, Megan. And we’ve been just so grateful we’ve had a number of people across the country come forward and want to tell their story of their loved ones, MAID death on our website, on our blog. And absolutely, we get a lot of comments about how helpful that’s been for others going through the process just in terms of what to expect from family perspective or the patient perspective. So, absolutely.
So I’m going to switch gears a little bit and talk about legacy projects. So with MAID and of course it’s a planned death and people are able to choose which day they’d like to die which gives them a bit of an opportunity to take part in legacy projects or create something to be used and cherish to after they’re gone. And of course this can happen with non-MAID deaths as well, but I’m just curious in your work, if you’ve heard of anybody doing some unique legacy projects and how that might’ve helped them with the dying process. Fran, do you want to get us started?
So I know I don’t have any knowledge of anything in New Brunswick, but through another organization, there was a discussion about legacy. It was a lady who in… It’s in here. Find it here. This organization here. This is a guy and there was a lady who was paraplegic and ill and she was on the trajectory to death. And what he does is he talks to the person you can buy an hour’s worth or three hours worth, gets there, ask the appropriate questions. And then you can add in videos or whatever you want. And it comes up with a DVD or a MP3 that your loved ones can listen to interactively. What did Megan used to love to eat? And her voice actually comes out. And I thought that was a really cool thing. I got an elderly cousin, I was going to buy it for her. But that’s the only thing I know of.
Thanks, Fran. I haven’t heard of that one before, so thank you for sharing that with everyone. Aaron?
I don’t know if I have any sort of stories of legacy but I think it’s been quite amazing to me how different people choose to exit in very different ways. And some people have compilations of favorite photos and soundtracks that they play well, it’s going ahead. And we had one patient who was a bit of a bit of a joker and after the [inaudible] was given, he seemed to sort of nod off. And then as the physician was switching over and putting the propofol, he jumped up and went, boo, just kidding. And then went back down and the physician nearly lost his mind, but managed to keep it cool. And that was the guy’s last words. So everybody has their own sort of their own unique way of being, and it’s often reflected in the way that they live in that in the way that they die.
Absolutely had so beautiful that people are able to bring that essence of who they are all the way through to the very end of their life. So thank you. Nicole and John?
Yeah. I think-
I think… I’m sorry, go ahead.
Oh, no, no. John, go ahead.
Sorry. I think MAID in and of itself and those assessors and providers who are involved in bringing this care to the patient leaves a legacy of its own simply by the conversations that they have with the patients and their families and their friends and especially those that were gathered for the procedure because it opens minds, I think, to this option and it generates conversations that are just so important overall in the spectrum of MAID related care.
And but with regard to kind of specific legacy projects one that stands out is of an early case that I was involved in again, back in 2017 where the patient having the MAID procedure about a week prior to I think it was week 10 days prior to the procedure gathered with family in their yard. And on the side of their garage, they painted memories kind of things that they had done together as a family, whether it was camping or canoeing or whatever. And it just struck me as a really nice thing that they could always see. And it was there that the backyard was the side of the garage is where they spend a lot of time together as a family. And I can just imagine that the children and grandchildren having the opportunity to see that every time that they were there. And I just thought it was a really nice touch for that to have happened and a nice legacy as it was.
Oh, that’s beautiful. And another one that really stuck with me was I had a patient who had some young children and was going through the MAID process and they had some children’s stories that they would commonly read to their young kids. And so they recorded themselves reading the books for their kids so they could continue listening to them. A lot of us nurses were quite weepy when we heard him recording it, but I thought it was a really beautiful way to keep him alive for his kids.
I thought right away about our child life specialist who we work very closely with for younger patients who have children or for grandparents who have grandchildren and they want to do some legacy work. So if folks have access to that kind of an allied health partner, that’s been a really amazing addition to our team at our hospital. So lots of interesting projects like doing matching knitted hearts. So parent has one and child has one hand print artwork. So that gets framed. So child has that, and there’s also a neat book called letters to my daughter, a letters to my son, which provides a framework for a parent to write letters to a child that they will then have down the road.
So lots of really great work coming from our child life specialist. And then I guess one late legacy project just a personal story about a patient who I remember all my MAID patients very well for different reasons because I find they’re all beautiful experiences to be traveling with people on these journeys. But there was one patient in particular who requested his MAID provision happened on one of our national park beaches. So for anybody who knows PEI, he wished to have his MAID provision on Brackley Beach which is a very busy active beach. And it was early September. So we knew that there would be folks on the beach at that time.
And so I initially I heard his request and I said I really don’t know, but I’m happy to ask about it. And we worked with our national park locally to ask the question, they were very, very supportive of the idea. And they had a plan in place for this gentleman where they were actually going to shut down the beach and have people at both ends of the beach to make sure that no one traveled in the area that we were going to be.
We had a funeral home lined up to be waiting in the parking lot. The parking lot was going to be close to the public. So I was really just so impressed by locally what our national park was able to do. And they felt very privileged to be participating in this request. Unfortunately, when they ran it by the national organization for parks, Canada, there had not been a framework in place at that time in order to allow us to proceed. And so we weren’t able to do it on the beach, but since that time, just before this gentlemen signed his final consent form, he also signed a consent form to allow his story to be told by Parks Canada, and to allow his case to move forward putting together a national framework for made in our national park system. And that work has proceeded.
And just to close the loop on the patient, he had a beautiful death with his family members and close friends around a bonfire in his yard on a beautiful September day with the sun streaming down. And he had a playlist playing of his favorite music and champagne served to his loved ones who were in attendance. So he ended up feeling very pleased about how that went for him or what the plan was for him. But it was a pretty incredible story and kudos to our national agencies who are willing to think outside the box when it comes to this. And so folks across the country have someone requesting a national park death. It actually, there is a framework in place for that now, thanks to this gentleman.
Megan, that’s a wonderful story. And I mean, it’s amazing that he had such a wonderful death. It sounds like it was very personal to him but also that he was able to do so much more beyond his death and beyond his area even with sharing his story so openly. So that’s great. So with about 10 or 15 minutes left, we’re going to switch gears and take some of the audience questions that have come through. So this is a bit of a logistics question, and maybe you can just speak to how this has done in your specific province, but people are wondering how do I find a doctor who is MAID friendly? Who do I contact to get an assessment in my area? And this person didn’t say where they’re from but I’m sure people in all the provinces represented here are wondering. So Aaron, did you want to start with that?
Sure. So at least in Newfoundland, we have MAID coordinators in all the regional health and then all the health regions. So it’s MAID at Eastern health or Western health or central health, lots of CAs has email, and there’s also phone numbers and you can do a Google search and find out who the main coordinators are. So it shouldn’t be very hard to find out who the person is, who can get you in touch with getting the ball rolling and finding assessors, and then finding out more information if that’s what you need. It should be fairly readily available.
Thanks. Nicole or John.
We use a centralized referral system here for the province and MAID information again is readily available online on a quick Google search. Anybody searching for major information here would arrive, I think, the first search result would be the Nova Scotia Health Authority website that would provide that information.
And there’s a phone number there, and that goes to my desks, or you’d be speaking to the nurse navigator and I can walk you through how to get that referral made.
Lots of work to be done in PEI on this front. What we see right now is patients will mention it to a physician in generally speaking, the physicians would know in their area who is involved in the work. But we worry about as I mentioned before folks falling through the cracks with this process. So we really need a formalized central area for these referrals to go in. 811 is still listed as an option. But we’re not super confident about what that experience is like for folks. And I would say the other problem with word of mouth referrals right now is definitely referral bias. So some of us have been more public in the fact that we’re doing this work.
And so we’ll get filtered a lot of the referrals and that creates a potential for burnout and not being able to keep up with the number of cases. And it also doesn’t allow other providers who would like to gain more experience to get that experience. So again, we’re hoping to move forward with our business plan to have that site of a central referral. But right now I would say it’s word of mouth or 811 or contacting health PEI, which is our single health authority.
Thanks, Megan. And Fran?
No. It’s right clicking instead of left. Like PEI, we have no centralization at all. We do have a 811, and it does not necessarily result… I’d already been no really like for the other half of the province, what they’re told. So it becomes word of mouth in my region at my little hospital that covers extended area. I’m the go-to person. So I go to a staff meeting and I tell people to send a referral to me or give them my phone number, just have them inquire. So it’s very formal and like PEI, I worry about people that are not on board with this and say, well, I don’t know how to do it. And I don’t know who does it. And it goes nowhere.
Thanks, Fran. And we also have a webpage on the Dying with Dignity Canada site called navigating of requests for MAID. So for the areas of not only the East coast but the entire country where there are centralized MAID coordination services or based on health authorities or different regions, you’ll find a full list there. So that’s always available and as we get more information we be updated as well.
So the next question, and a few of you mentioned this early on and I was very happy to hear it because advanced care planning is something that Dying with Dignity Canada is very passionate about and something that we try to advocate for with folks coming to us for support as well. And we do have advanced care planning kits on our website by province. So check those out if you haven’t. But do you have any tips for how to approach advanced care planning? And as we talked about early in the session, not everybody is as comfortable talking about death and dying, and some people want to sort of push aside the reality that we all will die at some point. So any tips for how to approach that with loved ones or maybe with yourself if you’re struggling with some of those thoughts about mortality? Fran, did you want to get us started?
Well, when I always tell my patients is it’s important to do this while you are well and you can change your mind, but really while you’re well and healthy this is the time to decide really how you want your life to go. And the most important thing is getting a substitute decision maker because it’s amazing… If I get that, I’m happy. It’s amazing how many people don’t have that. There are a lot of tool kits, like the one of Dying with Dignity really you could just print it out.
And the other thing is you’re talking to other family members. You can take an opportunity like an aunt dies or something or maybe we should talk about this now. And maybe you should do one too. Just don’t be afraid, I guess is the best thing I should say. You’d be surprised how families [inaudible]
Thanks, Fran. Aaron?
I think it’s something that we probably need to start bringing up at certain points of entry in the healthcare system. When people go into emerge, when people it going to start with their family doctor and with a new family doctor, when people go into long-term care, like any of those sort of points of transition, we need to start sort of requiring or routinely bringing up, do you have an advanced healthcare directive? How long has it been since it’s been revised? And I think that that serves two purposes, it helps the healthcare team kind of know that the plan is in place and what to do with A, B or C should happen.
But I think it really helps the patient and their family to start those wheels turning, to start thinking about, oh, what is my healthcare plan and what would I want in those situations? So I think it’s something that people can just avoid thinking about until they’re kind of thrust into a really urgent situation. And then they have to make all these panic decisions. So I think we need to normalize the requests of it and inquiry about it at multiple points in the system. And then it’ll just become a normal thing to have just like your blood type and your medications and all the rest of it. It’s just part of the normal information.
Thanks, Aaron. Megan?
I agree with what both Fran and Aaron said, so I try to normalize it. If I’m going in to see a patient at the cancer treatment center and they have a spouse with them, I’ll bring packages for both of them to make the point that it’s not just the person who’s sick, who should be looking at this, but we all should be doing it. I’ll make the point that I’ve done it myself. And at this point, knock wood, I feel like I’m fortunately healthy and maybe that didn’t need to be on my radar, but I make the point that this really should be for everybody to be thinking about.
And I totally agree Aaron, with those pivotal moments in someone’s care, and you can see those moments happening. So when there’s a change in diagnosis and new diagnosis and evidence of progression on a CT scan, those kinds of moments are key moments where we can take a step back and say, this is a great time to revisit this. And if we keep doing that in a normalized kind of way then I think that helps to remove some of the stigma and some of the challenges that people may have with it.
Thanks Megan. Nicole?
I do have a similar sort of thing. And we’ll tell patients I’ve done an advanced care plan. Everyone should be doing it so that they don’t take it as a sign that they’re dying imminently necessarily especially speaking to the cancer clinic patients. I really liked the website speak up for advanced care and often use that as a resource. So I’ll usually try and send patients either a link to the PDF version or the web version where they can answer questions and save it just depending on the person and what their comfort is with the internet. But I would just encourage people to bring it up like their healthcare providers, if they’re interested and even just start by asking what is an advanced care director or what is a personal directive so that someone can go over it with you.
Of course it’s a Nicole as our navigator having these conversations now, but before her arrival I would pass along to patients whatever we have available here on advanced care planning through the health authority and other resources as well. But I would just really try and encourage people to think clearly about how important and how meaningful the planning is prior to all of this unfolding. It’s critical that the patients and families have these conversations obviously. They really can save a lot of pain after the patient has passed. So I would always try and encourage people just to be open-minded about taking that step to have that conversation.
Great. Thanks. So we have a couple general made questions. So we probably, I think things are going to look the same from province to province. So we probably don’t need an answer from everybody, but I’ll just throw them both out and whoever wants to jump in can, and if you do have any stories or experiences you want to share related to this then you certainly can. So the first one is our folks who have made death able to donate their organs. And then the second one is related to life insurance and does MAID impact your life insurance?
So that’s one of the misconceptions. It is absolutely not as suicide and all insurance policies pay nationally. Right? That’s a given. So don’t worry about that. And the first question was? I forgot.
Yes, you can. Yes, you can. It’s a little difficult sometimes to organize, but particularly now with C7 where somebody could be physically very healthy but have a neurologic disease and so their organs aren’t very good. They can be donated. It’s a little complicated. You got to have a hospital but it can be done. Yes.
Anyone else have anything to add about either life insurance or organ donation?
Yeah, just sort of organ donation had a few cases in Nova Scotia. And just that if you are interested try to bring it up as soon as possible because there’s a significant amount of testing and coordination that goes into that. So I guess just to echo what I said before, if you can just say and also I’d like to do this and have it happened right away. There’s lots of information around it. But certainly can be done in some cases. And I understand there’s a lot of work nationally going on around organ donation and kind of expanding the practice with MAID so that it doesn’t… I know some places including Nova Scotia right now, it has to be done in hospital. But we are looking at expanding that to a home death.
Another option that I had a patient do was donate his… He was a cancer patient. He couldn’t not only donate, but he donated his body to the university medical school. So that is a real option. You can look into also. And that’s not as complicated. You could have a home death and do that.
Currently in Newfoundland we don’t have the option of doing organ donation. It’s being talked about, we’ve been meeting with the organ donation program fairly regularly but right now we have a lot of logistics difficulty just in doing regular organ donation. So it’s not something that they are currently allowing us to do but that should change because it’s possible to do it. And patients deserve to have that opportunity. So that’s an area of contention a little bit here.
For those who may not be aware of the first MAID case in Nova Scotia that involved organ donation was that of a physician Dr. Shelly Sarwal, who had her MAID procedure in August of 2018 and donated her organs. And in fact for her whole experience leading up to and postmortem was chronicled in a documentary called Her Last Project. And that actually is airing on CBC Gemma now. And there’s a website that is herlastproject.ca and it’s very interesting watch for sure. And it’s a real tear-jerker because it really shows the whole experience from the assessments on through to post procedure. And I would encourage anybody interested in that to have a look at that documentary.
Absolutely. Thanks. And one thing Fran touched on this, but the ability to donate one’s body to science afterwards in my one experience with that I just it was something I learned is making sure you’re checking in with your local medical school. Again, if this is something that you’re looking to do because there are specific requirements sometimes, and that might look different from university to university about certain conditions that a person might not be able to have to be able to donate their body. So another thing to keep in mind just in the planning process, if it is something you’re interested in.
So we are at wrap up time and I just wanted to share a comment that came through from one of our attendees today. They said, wonderful panel, very informative. Thank you all. And I just want to echo that. I think this was a fantastic opportunity to get to hear from our clinicians that are navigators on the East coast of Canada who are doing just wonderful work to support people in the communities on the East coast of our country.
We are hosting a couple more webinars as part of our summer series. So do check out our website and we will have the links online for you to register. And then of course, we’ll continue all throughout the year with monthly webinars. We will also have the opportunity for you to share your feedback through a survey. So that’s going to pop up once this webinar wraps up. And if you could take a few minutes to share your feedback we’d certainly appreciate it. So with that said, I hope everyone has a great afternoon and thanks again to our wonderful presenters this afternoon for joining us.
Thanks so much.
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