Aperçu régional : La mort et mourir au Québec

Webinaires | 21 octobre 2021

Accueil / Éducation et ressources / WebinairesAperçu régional : La mort et mourir au Québec

Le Dr Benjamin Schiff, médecin et professeur adjoint, ainsi que le Dr Georges L’Espérance, FRCS(c), M. Sc. (Adm. Serv. Santé), neurochirurgien, se joindront à nous et discuteront de divers sujets entourant la mort et mourir au Québec.

Voici quelques-uns des principaux aspects abordés :

En octobre 2021, nous avons tenu un webinaire sur le sujet de la mort et mourir au Québec. La conversation a porté sur les attitudes générales à propos de la mort et mourir au Québec et les idées fausses à propos de l’aide médicale à mourir.

Ce billet de blog mettra en évidence les principaux points à retenir du webinaire.

Conférenciers

LeDr Benjamin Schiff – médecin et professeur adjoint au département de médecine de famille de l’Université McGill. Participant depuis 2016 à des évaluations et à l’administration de l’AMM, il est membre du Groupe de ressources pour l’AMM du Collège des médecins de famille du Canada. Il exerce la médecine familiale à temps plein à l’hôpital St. Mary de Montréal, la plupart du temps en milieu hospitalier, y compris en oncologie. Le docteur Schiff s’intéresse depuis toujours à l’éthique médicale, en particulier aux soins de fin de vie.

Dr Georges L'Espérance – FRCS(c), M. Sc. (Adm. Serv. Santé), neurochirurgien. Après avoir obtenu son diplôme de médecine à l’Université de Nancy (France) et avoir suivi une formation de trois ans en neuroradiologie, le docteur L’Espérance a poursuivi sa formation en neurochirurgie à l’Université Laval, à Québec. Il a pratiqué la neurochirurgie à Québec de 1984 à 1990, puis à Montréal, principalement dans un centre de traumatologie tertiaire, à l’hôpital du Sacré-Coeur. En 1998, il a complété une maîtrise en administration des services de santé à l’Université de Montréal et, la même année, a reçu le prix Robert Wood Johnson. Tout en se consacrant activement à la médecine universitaire, il a été co-investigateur de plusieurs études cliniques en neurochirurgie et en réadaptation fonctionnelle et a présenté plus d’une cinquantaine de communications scientifiques; il a donné de multiples conférences sur des questions scientifiques ou éthiques. Il est actuellement professeur clinicien agrégé à la Faculté de médecine de l’Université de Montréal. En 1999, il a mis sur pied, avec le docteur François Sestier, le cursus médico-légal de la Faculté de médecine de l’Université de Montréal. Il compte plus de trente ans d’expérience en évaluation médicale indépendante. Ses expériences cliniques en neurochirurgie et ses réflexions personnelles l’ont naturellement amené à s’interroger sur la finalité de la médecine et, notamment, sur les questions éthiques, en particulier la surmédicalisation et les aspects de la fin de vie. À compter de novembre 2014, il a été président de l’Association québécoise pour le droit de mourir dans la dignité (AQDMD). Il consacre désormais l’essentiel de son temps et participe de très près à prodiguer l’ultime soin de compassion : l’aide médicale à mourir pour ceux qui la désirent.


Selon votre expérience, est-ce que la mort est un sujet dont on parle ouvertement et couramment dans votre milieu?

Nous sommes plus ouverts aux discussions sur la fin de vie qu’il y a 10 ou 20 ans. Nous parlons davantage de l’aide médicale à mourir maintenant, surtout depuis l’adoption du projet de loi C­‑14 et la légalisation de l’AMM en 2016.

Comme la médecine est aujourd’hui plus centrée sur le patient, nous sommes plus à l’aise de discuter des options de fin de vie.

Les deux panélistes saisissent toutes les occasions d’informer les patients, les membres de la famille et les collègues et de leur parler des choix de fin de vie, car il est encore possible de faire des conversations sur la fin de vie un sujet normal.

Est-ce que les discussions au sujet de la mort et mourir ont changé au cours des 5 à 10 dernières années?

L’obligation de soins s’est élargie, passant d’un but de guérison à celui de soins au patient, les objectifs de soins étant au cœur de l’approche, y compris les diverses options cliniques en fin de vie, notamment les soins de confort et l’AMM.

De plus en plus de patients sont renseignés sur les options de soins de santé qui s’offrent à eux – soulagement de la douleur, soins palliatifs, sédation palliative, AMM – de sorte que les conversations sont plus faciles que par le passé.

Quelles sont, d’après vous, certaines des idées fausses à propos de l’aide médicale à mourir?

  • Que c’est un choix facile. La décision qui consiste à se résoudre à ne plus vouloir vivre est difficile à prendre, même pour quelqu’un qui souffre.
  • Que c’est facile pour les prestataires. Les évaluateurs et les prestataires de l’AMM prennent leur rôle très au sérieux et veulent soutenir le patient, quelle que soit sa décision.
  • Que tout le monde connaisse le site AMM. De nombreux Canadiens ne savent toujours pas que l'aide médicale à mourir est légale. Il est donc important d'informer les patients de toutes leurs options en matière de soins de santé.
  • Que quelqu'un d'autre peut consentir à l'AMM pour vous - pour être clair, seul VOUS pouvez consentir à l'AMM. La demande d'AMM, comme l'appel à un service de coordination des soins, peut généralement être faite par des membres de la famille, des amis, etc.
  • Que vous pouvez demander AMM et le recevoir le jour même. Ce n'est ni tout à fait vrai ni tout à fait faux.

Des mesures de protection et des processus sont en place lors d'une évaluation AMM . Il est également important de se rappeler que la décision de demander une évaluation AMM demande souvent beaucoup de réflexion et de temps avant d'en parler à un prestataire de soins de santé.

Mais en pratique, si vous avez fait la demande, que vous avez été évalué par le premier ET le deuxième médecin (à l'heure actuelle, seuls les médecins du Québec peuvent fournir et évaluer des patients pour AMM), et que vous avez été jugé admissible, tout cela le même jour, alors vous pourriez avoir AMM le même jour.

Remarque : la deuxième évaluation peut avoir été faite avant la première, par exemple par le médecin traitant.

Quel est le retour que vous avez reçu d'une personne qui a assisté à un décès sur AMM , qu'est-ce qui les a aidés et qu'est-ce qui ne les a pas aidés à faire leur deuil ?

Vous avez la possibilité de dire les choses que vous voulez, si vous le voulez.

Le patient et sa famille sont en paix.

Les deux médecins n'ont jamais reçu que des commentaires positifs.

Faites-vous l'expérience du deuil dans votre travail ? Comment le gérez-vous, notamment après le décès d'un patient ?

Nous sommes des personnes empathiques, il est donc naturel de ressentir du chagrin.

C'est difficile quand meurt un patient que vous connaissiez depuis longtemps.

Le deuil est souvent vécu par la famille après un décès.

Les équipes de soins de santé se soutiennent mutuellement dans le deuil.

Si vous vivez un deuil, ne le traversez pas seul.

Pourquoi les infirmières praticiennes ne peuvent-elles pas évaluer ou fournir le site AMM au Québec ?

Les provinces n'ont aucune compétence sur le code criminel qui est une juridiction fédérale. C'est pourquoi, au Québec, la loi relevait des soins de santé concernant les soins de fin de vie. La loi a été promulguée en 2014 et le législateur était sur une ligne très étroite et prudente pour ne pas mettre les soignants, à savoir les infirmières, à risque d'être poursuivis en vertu du code criminel (fédéral), non modifié à ce moment-là. Ainsi, AMM a été considéré uniquement comme un soin médical sous la responsabilité des médecins et n'englobait pas les infirmières praticiennes. Puis vint la décision unanime de la Cour suprême (février 2015) qui obligea le gouvernement fédéral à modifier le code criminel. La loi "québécoise" n'a pas été modifiée en 2016 lorsque AMM est devenu légal au Canada avec l'introduction de la loi fédérale sur l'aide à mourir via le projet de loi C-14.

Les deux panélistes s'attendent à ce que les infirmières praticiennes soient en mesure d'évaluer et de fournir le site AMM au Québec dans un avenir proche.

Comment accéder à AMM au Québec ?

Toutes les références sont traitées par l'organisation des centres locaux de santé communautaire (CLSC) au Québec.

Données sur AMM du Québec

1er avril 2020 - 31 mars 2021

2 426 personnes au Québec ont eu recours à l'assistance médicale à la mort (3,3 % de tous les décès).

91% des patients étaient âgés de 60 ans et plus

83 % des patients avaient une espérance de vie de moins de six mois.

Problèmes de santé

Cancers : 73 %

Troubles neurodégénératifs ou neurologiques : 8 %

Maladies cardiovasculaires : 6 %

Maladies pulmonaires : 5 %

Autres : 8 %

Remarque : Les données ont été recueillies avant la modification du Code criminel par l’adoption du projet de loi C‑7, ce qui explique que les cancers constituent la majorité des problèmes de santé.

Lieu du décès avec assistance médicale

Hôpital : 48 %

Domicile :  39 %

Établissement de soins de longue durée (CHSLD) : 8 %

Centre de soins palliatifs : 5 %

En moyenne, l’AMM a été administrée 19 jours après la demande officielle.

Au Québec, 93 % des demandes d’AMM avaient des motivations physiques aussi bien que spirituelles/psychologiques.

Demandes n’ayant pas eu de suite

  • Demandes d’information restées sans suite : 33 %
  • Demandeurs ayant changé d’idée avant l’administration de l’AMM : 34 %
  • 17% ont annulé leur demande
  • Restant, raison inconnue

1121 médecins ont participé au processus AMM , soit une augmentation de 18 % depuis 2019-2020.

So to get us started, Benjamin, what inspired you to enter into this field?

So I would say just to give a bit of background, although I’m a full-time family physician, I primarily work or at least 50% work in a hospital in inpatient wards. And in fact, one of my earliest memories is a elderly woman who was suffering from ALS, so neurological issue. And she had something that’s called Bulbar ALS, which resulted in her inability to swallow and to speak. And basically she sort of slowly and inexorably got weaker and weaker until she passed away with her family around her. And it was clear that she was getting weaker, that she was suffering and limits in terms of what we could do with palliative care, otherwise in terms of alleviating her distress and her family’s distress.

I spent a lot of time, unfortunately, with people at the end of their life suffering, dying. I spent a lot of time now on the oncology ward at St. Mary’s as well, and it was clear to me that people should have that ultimate right. I’m a very firm believer in autonomy and that we should be choosing what happens to us and at the very end of our lives up until recently, we didn’t get to make that ultimate choice. And so I think I was inspired and saddened and disheartened in many ways, by some of the things that I saw.

I would read a lot about of what was happening overseas, particularly in Netherlands and their experience. And I felt that it was really important that we have the opportunity to offer that kind of care either at the end of life, or as things have evolved, even for people who may not at the end of life, but are suffering. And whatever palliative or other care can be offered to them, unfortunately is not enough to alleviate their suffering as they perceive it, and that needs to be more that we can offer.

So that’s how I ended up getting interested. I was interested in it before it became legal. I was talking about it and discussing with colleagues and residents and I was very happy when the opportunity arose for this to finally be offered to patients as Dr. L’Espérance, George is going to be sure talking about patients who are suffering and have that and should have the right, and now have the right to request the kind of care as they perceive it to help them at the end of their time.

Thank you for sharing. [foreign language] Georges, [foreign language]?

[foreign language].

[foreign language].

[foreign language]

[foreign language] And Ben, so same question. In your experience, is death something that is commonly or openly talked about within the community?

So I’ll speak, I guess, more towards my hospital community and I would say, yes. It’s hard to know sometimes what sort of comes first. I think having [foreign language] become legal has certainly allowed that discussion to be placed more openly. I know and I’m sure Dr. L’Espérance know the same thing that we’ve tried to bring this topic to our colleagues and help them become more familiar and to discuss it. But what I found in particular is that among nurses it’s been something that’s become more comfortable and more commonly discussed. And I think they, as a group, are taking more, again going back to being patient centered, which is the essence of nursing as well as medical profession. But in particular, I find that’s emphasized in nursing to really identify and support and advocate on behalf of the patient.

And when they see patients who are suffering, who they feel more needs to be done, it’s more common and more comfortable to have these kind of open discussions, not necessarily about me, but just in general about how to provide better care and better comfort to patients and families who are suffering. So I think there has been a more open discussion. I think that the legalization to me has allowed that to come into the mainstream, but I’ve been very happy to see that it’s … In the past, if I were to bring that up, there’d be more discomfort among colleagues and medical colleagues as well, and now I feel that’s changed significantly.

I agree.

Yeah, that makes a lot of sense. And the next question is sort of very similar, so I’m not sure if there’s anything else to add. If not, that’s no problem, but it was just how, I guess, have those specific discussions around death and dying changed specifically over the past five to 10 years or so?

The only thing I would say is that, in the past, I think there was again, a bit of reluctance, particularly, let’s say, with some medications. If you would be ordering whatever it was, being morphine or any, I think that you might choose to help somebody at the end of their life, there may have been a little bit reluctance and, “That’s a dose that you’re using, or why are you using that, or …” Sometimes there would just been a little bit of pushback I found, whereas now that’s not the case at all. In fact, it’s often the opposite where they would come to you and say, “Can we do more? This person seems to be suffering. Is there anything more that we can do?”

So I don’t want to get into too nitty gritty details, but clearly there’s been more of an acceptance of the fact that we owe our patients at the end of their life, as much as we owe them when they’re alive and when they’re thriving and when they may be going home as when they’re not going home. And so, that care doesn’t stop, and regardless of whether we can, “Cure somebody,” we have that duty and obligation and moral ethic and otherwise to provide care toward all through their stay and all through their life. And I think that’s becoming more and more clear as time goes on.

That’s great to hear, of course. So Georges, [foreign language]

[foreign language]

[foreign language]

[foreign language].

You should be able to share.

Okay. [foreign language].

[foreign language].

[foreign language].

[foreign language] Yesterday. [foreign language].

[foreign language] I just took snapshots of a couple of other slides. I think, we both got the information yesterday, exactly the same time, so it was very timely. So I’m just going to share just a couple of things.

Perfect.

Let’s see. Start broadcast. Sorry, it should work now. Okay. So I just wanted to give you an idea about in terms of how they define or how we look at the reasons for people requesting MAiD. And I think, it’s important to know that if you look 93% of the case is both physic physical and sort of spiritual. And I think, that’s a very important part that we probably will come back to talk to a little bit later, but that this is not about physical suffering alone. This is almost always 93% of the time, there’s an element that I think for most people and I think Dr. L’Espérance and I know that in terms of our work, is related more to the spiritual aspect of things or to the psychological part of it, which becomes as important, if not more important for most people.

And just again, sort of showing an idea about how long people are waiting in that you see the vast majority of people are less than 90 days. There’s very few that are more than 90 days. That’s the blue one, that’s 3%, but most of these things, most of the … Once the request has been made, the delay is almost always less than 90 days, and more often than not even less than that, often less than 10 days. Which again goes back to what was being mentioned before about certain things that have changed in the law for the good, in terms of not having to wait 10 days anymore, which I think was a big impediment. It made things very difficult and if we do talk about it a little bit more, also in terms of not having to require final consent.

So this commission is really something that’s quite unique and I think it’s very beneficial and helpful to us as practitioners and a sense of all the lawmakers to get a sense of where we are and where we might need to go to make perhaps changes or improvements as time goes on. But I’m very proud to say the Quebec’s been at the forefront of this from the beginning and I think it continues to be able to demonstrate an involvement and a reasonable oversight to look and gain information, to continue to improve the services that we offer to our patients.

Thank you.

I can show another slide if you want, and I’d say it in English and French. Can you give me-

Sure.

Perfect.

[foreign language] here. So right now, this is … You see here the progression of medical aid in dying and then in the last years, [foreign language]. There’s a kind of plateau in Belgium, Holland and … how do you say that in English? [foreign language].

Netherlands.

Netherlands, thank you. [foreign language] In the next year, with the new law, probably this number will still going to increase and I think that we’re going to get somewhere around four to five, 4.5 or 5% of MAiD for all the death in, in Quebec. That’s my provision here. I don’t think that with the COVID, we will have very much a change in that. Perhaps we will have less death because of the ratio, because we now know that in the year of the pandemic, there’s an over mortality of 12,000. So if you have moreover mortality of 12,000, well you have less patient that had MAiD. So for the next year probably, there will be a kind of stabilization, even with the new law and then in the next year, we’ll see where will be the plateau. [crosstalk]

Sorry, just to emphasize that, particularly because that over deaths were in the type of population that would more often be asking for MaiD, which would be more elderly patients in the vulnerable population like cancer patients, who were disproportionately represented by the deaths from COVID and who tend to be, as we saw earlier, the ones that tend to be the highest, the greatest proportion of patients that do request MAiD. So I completely agree. It’s going to change things temporarily anyway.

[foreign language]. I just said that with the new recommendations for mental health, I don’t think that it will be a highest number of death, because it will be very, very few patients that will be agreed for MAiD. I don’t know if Dr. Schiff agree with that.

No, for sure. I think that’s … I mean, that remains to be seen. I mean, there’s clearly a large, unfortunately a large percentage of our population that suffers with mental health issues. But I think that certainly at the beginning, when there are provisions and the law for that, they’re going to be very restrictive and very protective because it’s the most vulnerable, probably of all the people that we see because of trying to differentiate the suffering and their mental illness, which unfortunately can impact on how they perceive and how they communicate and how we are able to evaluate.

So there’s going to be a lot of … I think it’s going to be a lot tighter than it is for some of the other recommendations and other things within the law. That probably will change with time as we get more comfortable, as this happened with the first section, first part of MAiD. But I think certainly at the beginning, it’s going to be restricted to a very small group and very well defined group of people to begin with.

Yeah.

So I agree. [foreign language]

Last slide for just to complete that. This is the last year, ending at the end of March 2021. So cancer, 73% of patient and neurodegenerative or neurologic disease, excluding SLE and that kind of stuff, except if the patient was in the last month of his life. Probably this number here will increase in the next year because of the new law. And you can see, it’s very low beside cancer. Cardiovascular and pulmonary disease, these categories are … Those patients were at the end of their life. It’s with a very advanced degree. So [foreign language]. Dr. Schiff, you want to add something in English?

No, I agree. I think, some of these things may change with time and I think for some of the later questions, I may have some other comments of that, but clearly I think cancer will always be the most common or one of the highest proportion within this group. Although the others, I think will increase with time, but I think cancer will always be the highest proportion.

Yeah, and the second category that will probably increase is … That category is here of the neurodegenerative diseases. So the patient won’t have to wait up to the end of their life if they want to have MAiD before. But you know, it’s not a very large part of the patients. [foreign language]

[foreign language]

Okay. Thank you for all of that. It’s really helpful to have the visuals as well. So I’m sure everyone really appreciates that. Okay, so the next question is, what are some common misconceptions about the MAiD process?

So I’ve thought about this sort of long and hard and in terms of what you mean by process, by I’m going to just sort of list four things. One of them may be a little controversial, but you know what the heck. It’s nothing wrong with that. So I think the first one I would say is that the people think it’s an easy choice for patients. It’s never an easy choice for patients. Patient that makes this decision has thought about it, has a reflected on it. I mean, the decision to decide that you don’t want to live anymore is, no matter how much you’re suffering, no matter what’s going on, it still runs counter to most of how we see and perceive our lives and what we want. So I think the people thinking that the law is there and so people just sort of make that decision off the cuff. That’s not true. It takes a lot of courage and it requires a lot of reflection.

I think the other point that it’s easy for providers. It’s not easy for providers and nor are we as providers just sort of so happy to say yes, no matter what, that we just say yes, no matter what. That’s not true at all. We take this responsibility very seriously. We are there to help patients, but we also understand that there’s more than one way to help somebody. And that it’s important that we have that responsibility to reflect and understand the process, the meaning and all that goes into that request. And so, as much as we are happy to be part of this and to support our patients, it’s not that we don’t understand the significance and gravity of it.

The third point, which again, may be a little controversy, but there’s this notion around palliative care and whether this is part of palliative care or whether it isn’t. From my perspective, number one, no matter how good palliative care is, it’s not always going to be able to answer all the needs of patients. There are just some things that cannot be an answered with even the best palliative care. And from my perspective, I think people sort of see palliative care, some people see this distinct and separate from end of life care or MAiD. I do not. I don’t think it is and I think that, that’s something that can be discussed and I’m not sure other people in the audience how they feel about that.

And the last point I would say is that, and that may affect the numbers going forward is that this notion that somehow now that it’s been around for four years, everybody knows about it. All the patients know about it. So we don’t need to bring it up. We don’t need to mention it because if they don’t mention it, that’s clearly not something that they want. And again, that’s not true. That just happened to me a few months ago, where somebody didn’t seem to be aware of the fact that they might be eligible or they can ask for it, for whatever the case. And I think particularly as the law changes, not everyone understands what that’s involved in. So the belief that somehow we don’t need to talk about it as practitioners. That somehow if patient brings it up, they bring it up. If they don’t, they don’t, it means they don’t know. I think that’s also a bit of a misconception.

I think there’s still that as part of any kind of discussion that you have with a patient, when you discuss options for neurosurgery, options for blood pressure, options for end of life care, we have to be able to mention some of the things that perhaps patients aren’t aware of, obviously not in a coercive or suggestive way, but just to make sure that they understand all their options. So I think the misconception is that somehow we don’t need to do that because everybody’s aware. So those are kind of the four things that I would sort of briefly say. I’m not sure it’s exactly for the question, but it just were some thoughts that I had, reflecting on this.

No, that’s great. Thanks for sharing those and outlining them for us. [foreign language].

[foreign language].

[foreign language] Now they say, thank you for helping them with their suffering and the families say, thank you for helping. So I completely agree and there’s nothing like that look on their face when you say yes, they’re eligible and they just have that comfort of knowing that there’s a point when their suffering will come to an end and somebody’s heard them. Somebody’s heard them, somebody’s listened to them and somebody’s appreciating what they’re going through and acknowledging what they’re going through and is there for them. So, I agree completely.

[foreign language]

[foreign language] goosebumps. Thank you for sharing. [foreign language]

[foreign language].

[foreign language]. Thank you so much for that, Georges. So same question. Have you received feedback from individuals who experienced a MAiD death, about what they found helpful or unhelpful as they navigated their grief?

So there’s so much to say, and I’m conscious of the time. I’ll just say that I was trying to organize some rounds of the Family Medicine Forum, which is a national forum for family doctors. It was in Montreal one year when we could still meet in person. And I wanted to help people understand why that was important and hearing it, not through the words of a practitioner, but hearing it through the words of a family member who had experienced it. So I was there with another colleague of mine from Toronto, and this daughter of one of the first people that I provided MAiD for, eagerly agreed to be there, to share her experience and to share how important it was for her to be there with her dad at the end, at the time and the place that they chose together. She was there with her siblings who were coming in from France.

Not only that, but just to piggyback onto what Dr. L’Espérance was saying, it’s not only the chance to be there and make sure you’re in the room, but it’s also a chance for people to say what they may not have had a chance to say. And in particular, in this case, it was actually the patient who was dying, who was comforting his family. They were beside him. They were able to be in the room, holding his hand, being very close, and they were crying a little bit. And he was with them and saying, “It’s okay. [foreign language].” He was just so incredibly calm. He was comforting them. I mean, which is just not something you normally have a chance to see, because oftentimes, by the time people are really at the very end, they’re not able to communicate or provide any comfort to their family around them.

So just another positive thing, and I think that’s part of what made the experience for her so positive that she was willing to share that with other people at a conference, something very personal. So I’ll just say that I’ve never received anything but positive feedback. And even if it’s not verbalized, you can sense it. You can sense it in the room. You can sense the spirit and the warmth that’s there when families get to be together with each other, to help them through a difficult time. So I’ll just stop there.

Yeah. That’s beautiful and clearly beyond words at that point. So thank you for sharing that. Okay. So the next question is, do you experience grief in your work? How do you navigate this, particularly after the death of a patient?

So that’s … I mean, grief is part of what we do. Grief is part of caring, particularly in my work and I’m sure with Dr. L’Espérance, is that the work that he does. We live it, I’m not going to say every day, but I’ve certainly lived this for all of my years of practice. I worked in the emergency room. I work on the wards. I look after people who are dying and it’s very different for different people. There’s some people that you feel closer to than other people. There’s some people you feel more attached to, whether they’re patients that you’ve known for a long time. Sometimes the grief … In fact, more often than not, the grief is not with the person who passes, but with the family, because I think something that we all as human beings can identify is with loss, we’ve all experienced it at some point. If we haven’t, we will loss of somebody that we care about, whether it’s a friend, family member, sometimes it’s a pet, something that’s been important to us.

So I think as human beings, as empathic people, we can identify and understand what it’s like for family members to say goodbye to somebody they care about. Even at that moment when they know it’s the right thing and that’s often the struggles and the challenges and the courage that family members have, because they’re making decisions and they’re supporting the decision of a loved one, even though they know that they’re not going to be with them anymore, but they know that that’s what’s best for their father, mother, et cetera. So I think some of that grief is, is around watching other people suffering. Again, we feel that.

I’ll say that, when I started doing this, it was it wasn’t easy just because it also runs counter to what we’re always taught as physicians, that we’re supposed to be there to keep people alive, not to help them pass. And even though it’s something I felt, I had no doubt was the right thing to do, I did have some struggles at the beginning. Fortunately, I have people around me that support me. I have family at home and I work with an amazing team at the hospital. And so we cry together sometimes and we hug each other, because that’s part of it. Part of it is the emotion and if you don’t have the emotion, then I think you’re not able to really provide that kind of care.

So, is there some grief? Absolutely, there’s some grief. Sometimes it’s easier. Sometimes it’s harder. The best piece of advice I could say is don’t go through it alone, because you’re not alone, and hopefully you have friends, family and team around that can share. If you have a team that’s doing this with you, they’re going through the same thing. There’s no point in trying to keep it to yourself. Anyway, I could go on. Dr. L’Espérance, I’m sure has a lot of insights to add as well, but whatever grief there may be, it’s still an incredibly rewarding thing to be able to help somebody to end their life with their suffering, and I would never do anything differently regardless.

That’s awesome. Thank you for sharing that. [foreign language].

[foreign language].

[foreign language] So thank you both. [foreign language]. Thank you for taking care of the questions today. And we have some audience questions that have come in. That wraps up our planned questions. So there were a few audience questions. We’ve got a few minutes left. So Sam, are there any that you want to start with?

So one here, which can be answered in either language, why are nurse practitioners unable to provide MAiD in Quebec, whereas in other parts of the country, they are allowed to provide MAiD?

Benjamin?

I don’t know the answer to that question. I completely disagree with that. Certainly in parts of the country, they can assess or provide some places they can only assess, but not provide. I have the privilege of working with some amazing nurse practitioners where I am, who are just as capable to make assessments, do provisions, provide whatever care and comfort that’s necessary. And I think it’s going to change because I think in general, Quebec is moving forward to liberate nurse practitioners from having to be sort of attached by the umbilical cord to physicians, they’re beginning [inaudible] independence. So I would expect that eventually that’s going to happen, but the answer why, I don’t know what the answer is.

Well, I don’t know the answer, but I know the explanation because the law in Quebec has been made in 2014 and at that time, the criminal code was there. So it was only to protect the doctors. And so, the nurse wouldn’t be able to do it because it was for the doctors, that’s why. And it was on the thin line of the Health Services. [foreign language] When federal law went out in June 2016, [foreign language]. Short answer, because the law in Quebec was before that on the healthcare, and little bit shorter answer is that because government of Quebec didn’t do anything since the last four years, five years now to change that.

Thank you both. One question that we didn’t actually get to, that we’ve received quite a bit before, during our registration and then while we’ve been live is, folks who are having trouble finding a doctor to assess them in Quebec, what can they do? Who can they go to? Are there doctors required to assess them? Either one, feel free to start.

Georges, [foreign language].

[foreign language].

[foreign language].

[foreign language]. Go ahead Benjamin.

So I’m not sure if everyone understands the way it works on Quebec with that there’s a group into [foreign language] that’s are set up. So all the requests that come through, even if they go to a physician directly are referred always to this group, which are divided according to all the CISSS and CIUSSS throughout Quebec. So in fact, there’s always a bit of an oversight. There’s always a group that reviews and looks at things. So just so that it’s clear, it doesn’t go directly to a physician. The physician sort of unilaterally makes an assessment and organizes things. It’s always done with that kind of over-sighting group behind them.

So I’m not sure if that’s what the question was looking at, but that was again, part of what was put into place in Quebec. And again, I would say, having been aware of a lot of the challenges across the country, where many physicians practice in areas where they don’t unfortunately have a lot of support from their local community or government. That’s another thing when the law was created, to make sure that now there was always something in place, to make sure that people who were going to practice, would have the support behind them. So that is something, it may seem a bit onerous, but in fact, it is a beneficial thing, particularly in cases that may be more difficult or challenging or less clear, but there are these GIS they’re called, Groupes Interdisciplinaires de Soutien, set up throughout the province to receive and to process these requests.

If you agree, I will answer to one question I see regularly here from Lorna, how does medical aid in dying apply to for people who have severe Alzheimer’s disease lasting for many years, but do not appear to be suffering from pain? It’s important because now with the new law, C-7 since March 2021, a patient who have an Alzheimer within grade four or five, but still apt to decide for himself may have medical aid in dying, but with the 90 days of reflection, as long as he is apt, but he will lose some weeks or months of a pretty good life because he needs to be apt to have medical aid in dying.

What is on the studying table now and the commission just closes her work yesterday and we’ll have the report in November is, if a patient have the diagnosis of neurocognitive disease, degenerative disease, he would be able to ask for MAiD when he will not be apt anymore. That’s what is on the table now and that’s where we are going. That’s what the 86% of the Quebecois and 80% of Canadian wants. I agree with that in the last [foreign language] data that was done couple of weeks ago.

And that sort of comes out of a little bit of what’s changed in the law too, which is that prior to all of this, you had to be apt at the very end. So even if you made a request and you were apt up until five minutes before you went in the room, if something happened, if you had a stroke or you had some other medical process that took place, you could no longer consent. At the end, you were no longer eligible. That was one of the major changes that took place with C-7, which I’m sure you feel the same way I do, which was a very, very, very important change, because it created a lot of challenges sometimes in terms of how you manage people’s pain and other things that you felt might interfere with their consent and patients being afraid of this …

Anyway, it was something that was quite challenging and in many cases, and it’s something that all of us are very grateful for, but it’s still not something that applies to people that are at the 90 day track. It’s only if you’re in the sort of end of life or reasonable foreseeable natural death track. So again, I think everything’s going to keep changing the time. There’s always feedback that’s coming through practitioners and to continue to see what are the impacts, because as we know when the law’s created, we can’t always anticipate all the consequences. And so as it comes into being and the practitioners have a chance to see what’s happening, feeding back to the legislature and the commissions and hopefully they can respond to what may well have been well intentioned new laws that don’t necessarily have the consequences that they wished. And so it’s ever evolving and growing and changing, and fortunately people are also there to help guide us through that. So personally, I’m quite appreciative of that.

[foreign language] For people of the Orthodox Jewish Faith and who request MAiD, will this procedure affect in any way their right to be buried in a Jewish cemetery? I don’t know.

I’m not sure. I think, one of the things is that it depends who knows, because they don’t necessarily need to know. As we know certain things don’t necessarily get shared. We don’t write that on the medical certificate. So in Quebec, we don’t have to write that they’ve received MAiD. So depending on what somebody decides to share or not share. I mean, there’s a whole issue around, I don’t know all the details, but I know that around Orthodoxy, suicide is … And in fact, there’s a great aunt of mine that was not allowed to be buried in the Jewish cemetery because she had killed herself many, many years ago.

So again, a very strict religion for sure, that would be an issue. The question is always who finds out and how do you know that? So I can’t go into more detail than that, but I do know that we don’t have to share that information and that information is not on the death certificates when we complete them. So it’s not something that funeral homes would have access to. They would just know that the cause of death would’ve been cancer or whatever other condition that the person had. And the specific final details are not known to anybody except the people that were there.

[foreign language]. So there is in the law in Quebec and I think it’s the same in the federal, there’s a part of the law who says that, nobody can have his benefit, death benefit if you want, life insurance be denied because of medical aid in dying. It’s in the law. So, it’s not written, it’s written anywhere … It’s not written anywhere in the file that the patient had made, except in the very private medical file.

Thank you. Yeah, we actually get that question quite a bit. Folks asking if it’ll be on the death certificate, so thank you for clarifying that. I see that there’s still lots of questions. In the essence of time, I think we’re going to end here and I want to thank Dr. L’Espérance and Dr. Schiff for coming this afternoon and sharing all of your thoughts and opinions and expertise with us and everyone who is here. If you didn’t get a chance to … If your question didn’t get answered, please submit it to support@dyingwithdignity.ca and we will follow up with you individually. If we need to reach out to our panelists today, we can do so to help answer your questions. So [foreign language], thank you again, and everyone have a great afternoon and thank you for coming.

[crosstalk] Thank you for the opportunity to … Sorry Georges, but I was just going to say thank you for the opportunity to invite us and to have a chance to share our experience and hopefully provide more information to those of you that are looking for more information. So thank you very much for the invitation.

Same thing. [foreign language]

[foreign language]. Sounds great. We will do that.

[foreign language].

[foreign language].

[foreign language]. Thank you so much. Thank you all for coming.

[foreign language].

[foreign language]

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