9 mars 2023
Démence, AMM, et autres options de fin de vie
Webinaires | 25 février 2021
Dans ce webinaire enregistré, Mourir dans la Dignité Canada (MDDC) a organisé une discussion approfondie sur les options de fin de vie pour les Canadiens atteints de démence.
Parmi les sujets abordés, citons
- Accès à l'aide médicale à mourir pour les Canadiens vivant avec une démence
- Les changements proposés dans le projet de loi C-7 qui auront un impact sur l'accès
- Mourir dans la Dignité CanadaLes efforts de plaidoyer de l'UE en matière de demandes anticipées
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.
Le 25 février 2021, Mourir dans la Dignité Canada a organisé un webinaire sur la démence, AMM, et les autres options de fin de vie. Les panélistes comprenaient :
- Dr. Konia Trouton, MD, MPH, FCFP
- Dr. Justine S. Dembo, MD, FRCPC
- Puneet Luthra, directeur des relations avec les gouvernements et les parties prenantes à l'adresse MDDC.
Ce blog résumera certains des points essentiels de ce panel informatif.
Si vous préférez voir ce contenu en format vidéo, l'enregistrement complet du webinaire est accessible ici.
Première leçon à retenir : il existe plusieurs types de démence.
Lamaladie d'Alzheimer affecte plusieurs parties différentes du cerveau et son évolution est assez lente. Elle évolue progressivement, les premiers signes étant des pertes de mémoire, parfois des difficultés à trouver les mots, des difficultés à apprendre de nouvelles informations, en particulier celles qui concernent les événements de la vie d'une personne.
Ladémence vasculaire est liée à une maladie coronarienne ou artérielle. L'obstruction des artères cérébrales affecte l'irrigation sanguine de certaines parties du cerveau. L'état d'un patient peut se détériorer de manière progressive, avec une détérioration importante puis un plateau. Le plateau peut durer un certain temps, puis il peut y avoir une autre détérioration.
Ladémence à corps de Lewy est un type de démence lié à la maladie de Parkinson. Elle se manifeste lentement. Elle progresse graduellement, mais elle peut présenter des caractéristiques uniques, comme des fluctuations du niveau de vigilance et de la cognition, c'est-à-dire de la capacité de penser, et elle peut inclure des hallucinations vives chez certaines personnes.
Ladémence fronto-temporale affecte les lobes de l'avant du cerveau qui sont responsables de la manière dont nous contrôlons nos comportements et dont nous traitons les informations. Les symptômes peuvent inclure une désinhibition, une augmentation de l'impulsivité et de l'apathie. On peut observer une augmentation des comportements sexuels ou une impulsion à mettre des objets dans la bouche.
Remarque : on parle de déficience cognitive légère lorsque l'on constate de légers changements dans la capacité à utiliser le langage ou la mémoire, par exemple l'oubli de choses mineures, mais qui n'affectent pas la capacité d'une personne à fonctionner, que ce soit à la maison, dans ses relations ou au travail.
[3:31] Différents types de démence
Clé à retenir #2: Il existe trois caractéristiques clés pour aider à améliorer la qualité de vie des personnes qui vivent avec une démence.
- Attitudes positives à l'égard du vieillissement
- Se sentir plus jeune que son âge chronologique
- Satisfaction globale de la vie
En outre, d'après une étude australienne :
- Maintenir l'indépendance
- Avoir un but
- Possibilités d'interaction sociale et de maintien de la communauté
[8:10] Traits de caractère permettant d'améliorer la qualité de vie des personnes atteintes de démence.
Point clé n°3: Les étapes et la trajectoire que suivent généralement les démences, en prenant l'exemple de la maladie d'Alzheimer.
En général, les phases de la démence d'Alzheimer sont classées en trois catégories : précoce, moyenne et tardive. Le pronostic après le diagnostic de la maladie d'Alzheimer, en termes d'espérance de vie, est en moyenne de quatre à huit ans, mais il arrive que des personnes vivent plus longtemps.
Stade précoce : Les personnes sont encore indépendantes, le principal problème étant la mémoire.
Stade intermédiaire : Plus de problèmes de mémoire, de planification et d'organisation. Les gens peuvent commencer à ressentir de la confusion. Il devient plus fréquent de se perdre. Il peut y avoir plus de difficultés à prendre des décisions, des changements dans les habitudes de sommeil, des changements d'humeur et des symptômes intestinaux et vésicaux.
Stade avancé : Le déclin physique est plus évident. Certaines personnes ont besoin de plus d'aide pour effectuer des tâches de base comme se laver et s'habiller. Au stade très avancé, les personnes ont besoin d'aide pour manger et sont moins conscientes des autres personnes et de leur environnement.
Remarque : chaque démence présente un ensemble différent d'étapes et de trajectoires.
[10:20] Stades et trajectoire de la démence
Clé à retenir #4 : Admissibilité au site AMM lorsque vous êtes atteint de démence.
Note : Ce webinaire a été présenté avant l'adoption du projet de loi C-7.
Les personnes atteintes de démence qui ont réussi à obtenir AMM (avant l'adoption du projet de loi C-7*) ont conservé leur capacité tout au long du processus. Elles ont subi plusieurs évaluations avec différents cliniciens et ont souvent une relation de longue date avec leur neurologue. Et certains ont documenté leurs choix de fin de vie bien avant leur diagnostic.
Une fois ces éléments en place, il est possible d'engager une discussion ouverte et constructive avec l'équipe de soutien de la personne concernée.
*Le projet de loi C-7 a reçu la sanction royale le 17 mars 2021. La nouvelle législation permet la renonciation au consentement final. Les personnes atteintes de démence peuvent recevoir AMM si elles répondent à tous les critères et ont la capacité de consentir. Si leur mort naturelle est raisonnablement prévisible, elles peuvent utiliser la renonciation au consentement final.
[27:00] Qualification pour AMM lorsque vous êtes atteint de démence.
Clé à retenir #5: Les options de fin de vie qui s'offrent à nous au Canada.
Les soins palliatifs sont accessibles localement. Il peut s'agir d'un ensemble de médecins, d'infirmières, de travailleurs sociaux et de conseillers qui peuvent vous aider à améliorer votre qualité de vie au cours de ces dernières années.
Si vous n'avez pas d'accès local aux soins palliatifs, il existe une ressource appelée le Portail canadien en soins palliatifs.
Les soins de fin de vie sont plus nuancés aujourd'hui qu'ils ne l'étaient auparavant. Vous pouvez consigner dans unplan de soins anticipésles traitements que vous souhaitez ou non. Par exemple, vous pouvez mentionner des traitements spécifiques tels que l'utilisation d'un ventilateur, l'hydratation artificielle ou les antibiotiques.
Il est important de désigner un mandataire spécial qui pourra exprimer vos décisions si vous n'en avez pas la capacité. Pour être clair, un mandataire spécial ne peut pas prendre une décision d'aide médicale à mourir au nom d'une personne.
L'arrêt du traitement est également envisagé lorsque, par exemple, la qualité de vie d'une personne a diminué.
Une autre option est la sédation palliative pour réduire la souffrance à la fin de votre vie. Il peut s'agir d'une perfusion intraveineuse destinée à assurer votre confort en fin de vie.
[40:27] Options de fin de vie disponibles au Canada
Ce ne sont là que quelques-unes des idées recueillies lors de notre webinaire de février, intitulé "Démence, AMM, et autres options de fin de vie".
It’s my pleasure to introduce our speakers today. Joining us, we have Dr. Konia Trouton. She’s a physician based in Vancouver Island. Dr. Trouton is a founding member of the Canadian Association of MAID Assessors and Providers, and continues to be an active board member promoting education on MAID in Canada. Also, joining us today is Dr. Justine Dembo. She has been researching medical assistance in Dying since 2009, and has conducted capacity assessments on MAID requests in Canada since the Carter ruling came into effect in 2016.
She’s also a member of the Canadian Association of MAID Assessors and Providers, and Joint Center for Bioethics MAID Community of Practice. Our final speaker today is Puneet Luthra, Dying with Dignity Canada’s Director of Government and stakeholder relations. Puneet is a government relations professional with 15 years of experience in the charitable and non-profit sector. I want to thank you all for joining us today. We’re so glad that you could be here to speak on this very important topic and answer all of our questions.
We’re going to start the first part of the webinar, which will be Konia and Justine focusing on the education piece, followed by Puneet around 4:00 PM for the second part of the webinar. Puneet will be discussing advocacy updates for all of you. I will now turn it over to Kelsey who will get us started with our first polling question.
Hi folks. Welcome, and thanks for joining us. We do have a poll that we’re going to have pop up on your screen here. This is just to understand who we have joining us today and what personal connection, if any, you have to Alzheimer’s and/or Dementia. I’m going to launch that poll now. It should be up on your screen. There are four options there and we can answer there. Sorry about that. I see there’s a … One of the answers has a sentence there twice. Just ignore that. We will give you just a few more seconds to complete.
Okay. I’m going to shut it down in just a couple seconds. Try to get those final responses in. Okay, share the results. So, 61% of those on the webinar today have had a family member or friend who has, or has had Dementia. We do have some healthcare providers on the call as well. Some people who don’t have a personal connection, but are interested in learning more about dementia and end of life choice. Thank you so much for participating in that, and we do have another poll later on, so we look forward to hearing from you then.
Now we’re going to get started with some questions for our speakers who are here today. The first one is for Justine. I’m wondering if you can give us some information about the differences between Alzheimer’s, dementia, and mild cognitive impairment.
Thanks, Kelsey. Yes, I’m really pleased to be here and I hope everyone gets something out of today’s webinar. I prepared a slide ahead of time just because there are multiple different kinds of dementia, and so Kelsey’s question has a few different parts. At the bottom, you’ll see I’ve defined mild cognitive impairment, which is not the same as dementia. Mild cognitive impairment is where there are mild changes in people’s ability to use language or in memory, for example, forgetting minor things, but it doesn’t affect someone’s ability to function either at home or in their relationships or at work.
Dementia is more where they become difficulties in functioning. I’ve outlined some of the top causes of dementia here, knowing that I’ve left some out that are less common. The one you may know most about is Alzheimer’s dementia, which affects several different parts of the brain and usually has a fairly slow onset and progresses gradually with the first signs being a loss of memory, and sometimes difficulty finding words, difficulty learning new information, and particularly information to do with events in a person’s life.
Then there’s vascular dementia, which is usually related to coronary artery disease or arterial disease. It’s because of blocked arteries in the brain that will affect the blood supply to different parts of the brain. Someone might deteriorate in a stepwise manner with a significant deterioration and then a plateau, and that plateau can last for some time and then there’ll be another deterioration. Lewy Body dementia is a type of dementia related to Parkinson’s disease. It has a slow onset. It progresses gradually, but it can have some unique features like fluctuations in level of alertness and in cognition, which is the ability to think, and can include some vivid hallucinations for some people.
There’s also frontal temporal dementia, which affects mainly the frontal, so the lobes in the front of the brain, which are responsible for how we control our behaviors and how we process information. Some of the symptoms of that might be someone becomes what we call disinhibited. They may seem more impulsive, for example. They can also seem apathetic. There can be increased sexual behaviors or putting things in their mouths. Slightly different from the other types of dementia so far. Then we have mixed dementia where there are features of all of the above. I hope this summary is helpful.
It is. Thank you, Justine. I’m going to click it over to the next slide here and ask Konia, if you can tell us the prevalence of Alzheimer’s and dementia.
Yeah. Thanks very much. So happy to see all of you today. Yeah, dementia, no wonder many of you answered that survey saying that you or your family members have had dementia and are familiar with it, because there are 50 million people, according to the World Health Organization, 50 million people currently have dementia. If you’re over 68, 15% of our community over the age of 68 has dementia. It is very, very, very common. Because of our aging population and the demographics and the statistical projections, they think that by 2050, there will be upwards of a 100 million people with dementia, so this is a very, very common ailment.
If you go to the next slide, I’ve actually drove it down a little bit toward Canada. In Canada, when they rank causes of death, so this is put out by Statistics Canada, and trying to figure out what the most common cause of death is. Cancer and heart disease of course are number one and two, but Alzheimer’s specifically, is number eight. It’s fairly high, it’s in the top 10. Annually, there’s about 6,200 deaths attributed to Alzheimer’s. Now, there may be people dying of cancer and heart disease that have underlying Alzheimer’s and that may not be coded, but definitely, it’s the first and primary cause of death. There’s about 6,200 people dying every year due to Alzheimer’s.
The Alzheimer’s Society does statistics on a very frequent basis and they are a very good organization for you to know about if you have someone living with Alzheimer’s or you have someone with dementia. This organization has calculated that almost three quarters of a million Canadians currently have dementia, very high numbers. So, you are not alone, but it’s good to know that 60% of the people who have dementia do still live at home. That’s really great. So, 60% of you who have dementia or have family members living with dementia living at home, that’s very, very common. If you’re in a long-term care facility though, about 50% of those people in any long-term care facility do have dementia.
It was really, really a common thing. Kelsey, I think I’ll go even a little further and say, because it’s so common, what we’re trying to really find out and focus on more about is quality of life, and quality of life and how do you live well with this disease is really important. If you go onto the next slide, you’ll see that there’s quite a lot of research coming out from different organizations right around the world, so that you can do as best as you can when you have dementia, and support those whom you love who have dementia. The UK, a really nice journal article came out summarizing, what are the three key traits to make sure you live well at home with dementia?
Those are people that have a really positive attitude toward aging. Aging is not a negative thing, but aging is a positive thing. If you have a positive attitude, you’ll do well with dementia. If you feel younger than your chronological age. So, if you’re 80, but you feel like you’re 50, that’s fantastic. You’re going to do really well if you have dementia, and overall satisfaction with life. So, those are the key attributes. If you’re a glass half-full person, this is going to be very good for you. You’ll cope better with this diagnosis.
The Australians have done a slightly different tilt on this. They, of course, people around the world are investigating dementia and various aspects of it all the time, but I thought this particular one was interesting because it looked that if you are in a long-term care facility or your loved one is in a long-term care facility, what is really important is, of course, maintaining independence as long as you can, as many things as you can do for yourself for as long as possible, you’ll have a better quality of life, and having something to do, even if it’s something as minimal as wheeling somebody else, wheeling your roommate to the dining room, that is really important to have something specific to do and opportunities for social interaction.
Those are the three factors that improve your life in long-term care. Hope to give you a little bit of a flavor on, how can we do better? Because all of us are going to have to cope without, either among ourselves, our loved ones, or our family members.
Thank you. That’s such helpful information and insight, so we really appreciate you sharing that, Konia. We have a question for Justine. What stages or trajectory does Alzheimer’s or dementia usually follow?
Thanks, Kelsey. So, I decided to use Alzheimer’s dementia as an example, just because each Dementia has a slightly different set of stages and trajectories, although Alzheimer’s is the typical example that we use. Typically, the phases of Alzheimer’s dementia are classified as early, middle, and late, and the prognosis after diagnosis of Alzheimer’s disease, in terms of how long someone might live, is on average thought to be four to eight years, but there are people who can live as long as 20 years after they’re diagnosed with dementia. I will say that this issue is near and dear to my heart because I had two grandmothers with dementia, and one of them did live for about 18 years after diagnosis.
The early phases of dementia, people are often still very independent. The main issues that come up have to do with memory. Memory about where did I put something, or what did I do today? Or what did my friend just tell me? And difficulty planning events or organizing tasks, but generally people are still quite independent. In the middle phases of dementia, you notice more challenges with memory and planning and organizing. People can start to experience confusion. It becomes more common to get lost. There may be more difficulties with decision-making, changes in sleep patterns, changes in mood and bowel and bladder symptoms as well.
Then later on in dementia, you notice more of the physical decline, whereas earlier it’s more of a cognitive decline. Here, people have more difficulty with physical tasks, sometimes need help with basic tasks like bathing and dressing. At the very later stage, people need help with eating as well and become less aware of other people and of their surroundings. The Alzheimer’s Society, for those of you who don’t know, is an excellent resource. I would direct you to the website, and in a later slide, I actually have the link for that website. So, there’s more information on the stages of dementia on that website.
Thanks Justine. Thanks for going over those stages. I’m going to ask now Konia. What does the end of life experience often look like for a person with dementia, and is dementia usually the only condition that a person has or do they have other conditions as well?
Thanks, Nicole. Yeah, it’s quite possible that dementia is not the only aspect of their healthcare that is an issue. Absolutely, if they have other challenges such as cardiovascular problems or intestinal problems, or mobility issues pre-existing the dementia that can make life a little more complicated. I don’t have a good statistical indication of how many people with dementia also have something wrong with them. We call it in medical terms, comorbidities. It’s a funny word, but comorbidities just mean there’s more than one medical problem that you have that you’re trying to address.
It can certainly look different for someone who has dementia, and in addition, another health condition. But for all people with dementia, it’s really clear that community is really important. It’s really important to have a good relationship with your caregiver and with your family, and to be able to discuss the stages and changes and what you need help with. You want to continue to maintain independence no matter what the underlying condition is, and no matter how impactful the dementia is to you. Activities that retain a sense of purpose routine and structure are really increasingly important, and you’ll find that even if you have another health condition, that exercise and getting out, exercise and social interaction are probably the two key things that are really important.
Thank you so much for that. Justine, did you have some information as well that you wanted to share about this?
I think Konia covered most of it. I think what I want to emphasize, which you can see on this slide is that we sometimes, in the world medicine anyway, have a model of thinking about illness that focuses on people’s deficits more than their strengths. I think it’s really important in dementia to focus on strengths as well and on quality of life and on the sources of resilience. So, things that make us feel who we are and make us feel like we can live according to our values in life. So, with a good support system, that is often possible for people with dementia, but as Konia says, staying connected is really important, having a community.
I would also add in volunteer work, being involved in advocacy work, including advocacy work around dementia, or being involved with the Alzheimer’s Society would be another sense of purpose or meaning, and having a routine and structure can make life with dementia a lot easier.
Thank you for that. We have a question for Konia. So, what are the most common fears or concerns that people typically have about dementia?
Yeah. The two common ones are getting to the stage that they can’t recognize their loved ones. I think that is probably a really common fear that they’ll get to a stage where they can’t remember their daughter’s name, they can’t remember their grandchildren, and that they have difficulty remembering those important details. That they’ll wake up confused about where they are, who they are, so they’ll lose track of life as they know it. Those are probably the most common ones. When we look at it and measure it the other way round though, the most common fears that we in health care worry about is false.
Okay. Thank you, Konia. Justine, just quickly, one more question for you. What supports exist for patients and caregivers that you know of?
Thanks a lot, Nicole. I actually think I may point you to a particular slide that I had created [crosstalk].
I just want to figure out, so I’m really sorry about this, but [crosstalk].
I think I’ve got it here.
Oh, it’s slide 17. Yeah, thank you.
This is by no means a comprehensive list of supports, but it’s a place to start. So, certainly, your family doctor is an important support, whether you’re questioning whether you might have dementia or you have a loved one with dementia. The Alzheimer’s Society of Canada is wonderful. That’s alzheimers.ca, or alzheimer.ca, and there’s endless links to resources there. There’s also a specific Toronto Dementia Network. The Baycrest Center for Geriatric Care has excellent wealth of resources too, readings and information around dementia, and educational resources also.
There’s the Canadian Academy of Geriatric Psychiatry that also has a resources page. You may have also heard of the Local Health Integration Network. This is something you can access through your family doctor, and they have, for example, links to home care and potentially occupational or physical therapy as well.
Thanks Justine. Just to mention, the Local Health Integration Network is an Ontario service. If you’re not in Ontario, there may be some other similar bodies in place or health authorities and that kind of thing. If you do have any issues with finding access, we do have some listed on our website as well. So, we’re going to switch gears. Oh, sorry. Go ahead.
Yeah. No, I was just going to say that in some provinces people find the 811 number for health information really useful. Don’t hesitate to use 811 even if it’s just to point you in the right direction to get more information, that would be all right.
Absolutely. For sure. We’re going to switch gears a little bit now and we get a lot of questions all the time, and in preparation for this webinar, many of you were in touch with us with questions about dementia and medical assistance in Dying. So, we are going to talk about that now. Before we do, I’m going to have another poll pop up, and this is asking you, it’s going to pop up on your screen now, if a person with a dementia diagnosis can qualify for MAID. You have a few options to choose from there. Again, we’ll just give everybody a few seconds.
We also see a lot of questions coming through the Q&A, that’s fantastic. We will be pausing later on in between Konia and Justine’s presentation, and Puneet’s presentation for some questions from the audience that we’ll be asking Justine and Konia. So, we definitely see you typing to us and we’ll get to those as many as possible later on. I’m going to end the poll now and have that pop up for you. So, 42% of you said yes, sometimes. 33% of you said no. 23%, I don’t know, and 2%, yes, always. Now I’m going to ask our clinicians here, Konia, specifically, if a person with dementia can qualify for MAID.
Sure. Thanks, Kelsey. Yeah, absolutely. Someone with dementia can qualify for MAID, but remember that they have to meet all of the criteria that are spelled out in the legislation. Currently, we’re working under Bill C-14, so they have to meet all of those criteria. They have to understand and articulate that they’ve got a serious illness, disease, or disability, so they have to know what their diagnosis is. They have to have an advanced state of decline in capability. So, they have to articulate, what does that mean? Why are they in an advanced state of decline in capability? They have to have intolerable suffering that cannot be alleviated in a means acceptable to them, and they have to have the capacity to make that decision.
Currently, under our legislation, we also have to know that their death is reasonably foreseeable. If they meet all of those criteria, they can have MAID. There have been people with Alzheimer’s who have been successful at getting MAID, obtaining MAID and dying with assistance. There have been people with Lewy Body who has applied for MAID and been successful, and there are people with vascular dementia. All of those situations are possible under the current legislation.
Thank you so much, Konia. There’s a lot of talk about legislation and we’re meeting today at the end of February at a very interesting time, because we do have legislation currently going through the system here in Canada, and we’re anticipating some pretty big changes coming up in the next little bit. Now we’re going to welcome Puneet who we introduced earlier in the session, and he’s going to provide a brief overview of C-14, the existing legislation, as well as C-7, the legislation that is in the works. You’re going to hear a lot more from Puneet afterwards. He has a lot to share about advocacy, but for now, he’s just going to provide this overview to set the stage a little bit.
Thank you, Kelsey. Thank you, Nicole, and Justine, and Konia, both of them, I really listened quite intently. It was very fascinating for me to learn from you both. In terms of C-14, which is our current legislation, I’ll speak to that in the context of Bill C-7, which seeks to change C-14. Really, as you know, Bill C-7 is being debated in the House of Commons right now. What is being debated is the government’s response to the amendments proposed to bill C-7 by the Senate. Let’s focus on some of the key things that are being debated and which will be voted on soon. We can’t forget that the signature change being proposed is to remove the criterion that one’s a natural death be reasonably foreseeable, that it would be open to individuals whose death is not reasonably foreseeable, and therefore expand access to medical insistence in dying.
The other part of C-7 that is retained as of right now as well is the opportunity to waive the requirement that one provide final consent at the time of the MAID procedure. That is known, with regard to Audrey’s amendment, it’s also known as that, and really it provides the opportunity for someone who has been assessed and approved for MAID and could have even set a date to waive the requirement that they provide final consent at the time of the MAID procedure if they have some agreement with their clinician or physician.
But in terms of what we are at right now, in terms of the government’s response, we have a sunset clause on the exclusion of people whose sole condition is a mental illness from seeking access to MAID. The government has proposed that, that exclusion lasts for 24 months. They will use the 24 months to study the issue further, and after which time, presumably, people with mental illness as their sole condition could be eligible to seek access to MAID, or could be eligible to receive MAID. During the time, as I mentioned, there would be an independent review and there was also a commitment by the government to undertake the comprehensive review also known as the parliamentary review, which would study the issues of advanced requests, which are of high interest to this audience I know.
Advanced request will be included in the study being conducted by the parliamentary review along with issues around mental illness. Again, palliative care, mature minors, and they have added study of the protection of people with disabilities to that parliamentary review. Finally, I mentioned one of the final amendments that is being proposed in the government’s response is to expand the collection of race-based data around people who request and receive MAID.
That is designed, it’s really a function of the discussions that have been had around the need to collect more information on various groups who may experience inequities within the system toward receiving access to MAID. So, all in all, we do believe that the House should pass this, and when it gets to the Senate, we would encourage them to pass it as well. But I’m happy to answer any other questions later on as well. I hope that helps.
Yeah. Thanks, Puneet. Thanks for giving that outside overview. That’s helpful, and we’ll talk to you a little bit more and get into it a little bit more after we’re done with our education piece with Justine and Konia. To get back and getting a little bit more into dementia and MAID, Konia, I have a question for you, which is, for those with dementia who have qualified and move forward with MAID under C-14, what has that looked like?
Yeah, no, it’s a really good question. I think people are very curious at, how does that look like? The people that have moved forward with dementia and been successful in obtaining MAID and going ahead with that have retained capacity throughout the process. Now, Justine’s given you a nice trajectory of how people change during the course of their illness with dementia, but on any given day, there could be some fluctuations, and any different day of the week, there could be some fluctuations. Those people that have qualified for MAID have had a few different assessments. They’ve not just had one assessment with, for example, a family doctor, and one assessment with a MAID provider.
They might have had two or three assessments with each of those people. Those people with dementia have had a longstanding relationship with their neurologist. I think that’s key. I think that some of you might be a little concerned that this issue of mental health and dementia might be confused or clouded, but we in healthcare consider dementia really to be a neurological condition and not really a mental health condition. Justine you can help clarify that part as well, but that’s how we’ve understood it. Someone with dementia, any of the types of dementia, is usually under the care of a neurologist at some point, either to get the diagnosis or to confirm the diagnosis.
Some of them might be diagnosed certainly by their family doctor, but it is seen as distinct. It has been really important for those people who have qualified for dementia, sorry, have qualified for MAID and have dementia, that they have had a few elements in common. They’ve had a really supportive family who understands them and their wants, and they’ve had a standing interest in having an assisted death. Some of those people have expressed an interest in an assisted death even before the legislation was passed in 2016. They might’ve already had documented that type of consideration a decade before when maybe they were first diagnosed.
They’ve always had a long-standing interest in having an assisted death. It’s consistent with their belief pattern. Second is they support a family member who understands what their objective is and has openly discussed death and dying at the time of the diagnosis and throughout the diagnosis, and their family physician or primary care provider or nurse practitioner or neurologist has very carefully specified what their prognosis is that they have four to seven years, for example, to live. If that prognosis is spelled out, it’s been so helpful under C-14 because of that reasonably foreseeable death clause.
You can see that you’ve got those elements in place of this supportive open discussion. Despite the fact that they might fluctuate day to day and week to week, they have a consistent underlying belief that they want to have an assisted death at the point where things get bad. They have, of course, decided to have that assistance before their natural life comes to a close end. They still have that capacity to make the decision, and they still must retain that capacity on the day of the decision. That’s really, really, really important, and that’s been difficult sometimes for people to understand that they cannot relegate that decision for assisted dying ever.
There is no substitute decision-making in MAID. You cannot say, oh, my daughter knows exactly how I feel. You cannot do that with assisted dying. So, people with dementia who’ve been successful have chosen to end their life early.
Thank you for that, Konia. I think that’s really helpful for everyone to understand. As a provider, what you’ve been experiencing with individuals and what providers all across the country have been doing over the past number of years. The next question is also for you Konia as a MAID provider. How do you anticipate under C-7, and it’s not finalized yet, of course, but with what’s proposed at least, how do you anticipate C-7 will affect access for those with a dementia diagnosis? And what might that look like that’s maybe a little bit different than what C-14 has looked like?
Yeah, thanks for that question. Well, one of the proposed changes is that we would just have one witness to ask when people put in the request to have an assisted death, that there’s only one witness. That might help, because in some rural situations or some remote situations, there might only be one person that they can ask to be that witness. That will certainly improve access and I think that’s important. Early on in an assessment under C-7, the clinician like me will have to decide whether or not that person’s death is reasonably foreseeable or not.
So, it’s going to divide the community immediately into two groups. When I see someone, does your diagnosis fit with the idea that you’re going to have a death that’s reasonably foreseeable or not? In some situations with dementia, some clinicians feel that the death is not reasonably foreseeable, and that’s why people with dementia have not qualified under C-14. I think that with C-7 coming on board, that criteria is still there. We still have to know whether your death is reasonably foreseeable or not, but there’s going to be refreshed education for clinicians so that we can understand that term. How do we know what track to people on to put those people with dementia on? Do we put them on the track where your death is reasonably foreseeable or not?
As Justin just mentioned, some of the types of dementia can give a long, long, long prognosis. That means when you’re diagnosed, you could have two decades of life with that. Those types of people are going to be on the track under C-7. They’re going to be under the track of death not being reasonably foreseeable. Those people are going to be slightly treated differently from the time that they put in their application to when they could legitimately receive assistance in dying. It’s three months. It’s not 10 days as it is under C-14. It’s three months.
During those 90 days, it is really important that they have the second assessment done. It’s mandatory that they have the second assessment done by someone who knows their condition. That might be their primary care provider, that might be their neurologist, that might be their family practitioner, but they have to have a thorough assessment done by someone who knows their condition. That’s going to be a little more challenging. On the other hand, I think it’s great because it means that, during those 90 days, as soon as someone puts in their request to have an assisted dying, it’s going to initiate and trigger off a thorough review of any possible things that might improve that person’s quality of life.
Clearly, when you put in a request to have an assisted death, you are desperate. You’re so desperate and so unhappy with your circumstance that you want to die. We, as MAID providers see that as urgent. So, the person who doesn’t have a reasonably foreseeable death, but yet still wants to die, then it means that, that’s a trigger for over 90 days, we’ve got to figure out, are there social supports that would be better? Is their living circumstances better? Is there better disability supports that might help that person?
I think it’s really going to help people with dementia try and find means and ways to cope better with that diagnosis. It could be that, at the end, they do get an assisted death, but on the other hand, I think it’s going to provide many more alternatives and strategies and force us to look more closely at the quality of life people with dementia are having. All right? It’s a long-winded answer, but I hope that’s addressed your question there.
Yeah, no, thank you, Konia for going over all of that because we get questions about that all the time and it’s great to have some clarification, so thank you. I’m going to ask this to actually both Justine and Konia. Maybe Justine you want to go first, but as assessors, what are the unique considerations that you experienced when assessing or providing MAID to someone with dementia in particular? There you go.
Yeah, sure. I can step in. I think some of those have come up already, but I think if someone were to ask me, what is the number one most unique consideration, it really is that question around cognitive impairment. The question that comes up from a lot of people is, how can I be capable? How can I meet the criteria for capacity, for MAID, for dementia, if I have cognitive impairment? One of the unique considerations is to what degree does someone’s cognitive impairment affect their capacity and when does it affect their capacity?
The fact is that people with cognitive impairment can certainly be capable with respect to MAID. It’s true that in the later stages of dementia, that is less likely. But especially in the early and even middle stages of dementia, it’s often possible to have capacity, even if you don’t remember what you ate for breakfast, because capacity is really more about your ability to understand your medical circumstances. I know this relates to a later question you’re going to ask, but since we’re on this, the ability to understand your circumstances and the medical facts about your situation, and what the consequences are of different decisions you make, and it also involves your ability to understand how those concepts apply to you.
As long as someone’s able to do that, even if they have poor memory or periods of confusion, episodes of confusion, they can still be capable. I think that’s number one. Number two was addressed by Konia really well in terms of the trajectory of dementia, and the question about whether death is considered reasonably foreseeable or not in that case, and how does the law apply. But for now, I think I’ll stop there, and then let’s see if Konia … Am I missing anything, Konia?
No, I think that was really great, Justine. I’ve noticed in the few patients that I’ve cared for that have dementia and wanted MAID, that this issue of fluctuating capacity at various times is really important. I pay quite a bit of attention to that. In fact, when preparing for the assessment of someone with dementia, it’s really important that I talk to the primary caregiver, whoever that might be, and say, is there a time of day that would work best for that person to have this assessment done? Because we want to be as clear as possible.
The other question is, what location would be best for that person. For example, bringing someone into a foreign office, a medical office that they’ve never been in before, that doesn’t work well because the person becomes confused about their surroundings and taking in different types of stimulation, and so it’s harder for that person to focus on the subject at hand, which is their request for assisted dying. I ask, what place would be most conducive to have that interview, that assessment, and try and attend to that, and then, as best as possible, to go at the time of day that is best for them.
You don’t want to go when that person has just got out of bed in the morning. You don’t necessarily want to go when they’re starving and waiting for lunch. So, there is certain times of the day that might be more conducive. I think that, that’s really important. Those of you who are on the call, who are listening, who are worried about their loved one and thinking, oh, that my loved one has continually expressed an interest in having an assessment for assisted dying. They want to start picking up and paying attention to the patterns that their loved one is in the best situation possible to explain themselves to remember what diagnosis they have and what their trajectory is.
Actually too, I might add to what Konia is saying. One thing that came up a bit earlier was the question of hallucinations. So, someone with Lewy Body dementia may have visual hallucinations and see things that are not there. A lot of patients I’ve worked with have been concerned that that would mean they’re not capable, but again, having a hallucination may be completely unrelated to the MAID request and doesn’t necessarily affect capacity. The other thing I would bring up, Konia is bringing up a really good point about the time of day of assessments and the environment.
Things like having your glasses on and your hearing aids on as well can make a difference and making sure the person’s senses are as corrected as possible if needed.
Those are great points. Thank you. We have a question for Konia. So, many individuals have been sending in questions about MAID. For those with dementia, it’s a very common topic for us. But can you also share with us in general information about end of life options in Canada, not just for those with dementia, but just in general?
Yeah, absolutely. Absolutely. Yeah, I mean, earlier on we talked about how many thousands of people in Canada have dementia. Clearly, MAID is not going to be a consideration for most of those people. Many people will explore these other end of life options. These other end of life options apply whether you have end stage pulmonary disease, end stage cardiac disease, cancer. These are really important things to know as you come toward the end of life. Most of us, toward the end of our lives, will have some involvement with palliative care. Now, palliative care as a movement has been certainly in Canada for many decades, and it is increasingly strengthened, and I think even made more robust because of assisted dying because people are realizing that’s a good alternative.
Usually, palliative care is accessible vocally, and it might be a collection of physicians, nurses, social workers, counselors who can help with making your quality of life in those final years better. There’s also something called the Canadian virtual hospice. So, if you don’t have local access to palliative care, or in addition, you want something online, you can just Google Canadian virtual hospice, and that will provide you some alternatives to improve quality of life toward the end. As people are getting more and more elderly, people will adjust and change the do not resuscitate orders.
Now, it used to be simply DNR, do not resuscitate, but actually, it becomes a little more subtle than that. You can actually very specifically say, I don’t want to have defibrillation, I don’t want to have intubation, I don’t want to have a prolonged stay in the intensive care unit, I don’t want to have antibiotics, I don’t want to have a vaccine. So, you can be very specific about what kinds of things you do not want, and then designating a substitute decision maker who can make those decisions if you’re not able to. That is really important in the end of life options is to clarify and share your deep held beliefs with someone that you love and you trust.
The other options, of course, are the consideration of withdrawing treatment. Some people at the end of life might choose to stop dialysis. They might choose to stop blood transfusions, even though those things might keep them alive, they might choose to withdraw them because their quality of life, despite those treatments, is very poor. Those are not medical assistance in dying whatsoever. That’s something that’s been around for decades, or withholding treatment, for example, choosing not to take antibiotics, or not to take steroids, not to have surgery. Those are all considerations that you can choose if your quality of end of life is poor.
The other last thing is palliative sedation. The people in palliative care are very expert at that, and making sure that you don’t suffer at the end of your life. There are ways to provide comfort that cannot be achieved otherwise. That might be an intravenous drip to make sure that you’re comfortable and you don’t suffer at the end of life, but it is not an assisted death. It is not something that you request as an individual, and you designate a time, and a place, and a space for. It is something that is provided by the healthcare team in conjunction with your substitute decision maker.
Those are all really important things to know about. The objective of all of them is the same. We don’t want people to suffer and you don’t want to suffer for a minute longer than necessary as you’re coming toward the end of your life.
Thanks, Konia. Yeah, and these are really important to know, and they are also listed on the Dying With Dignity Canada website, if you want some more information about other end of life options, so thanks for going through those. We are going to move on now to capacity. I have a few questions all for Justine about capacity. Let me just switch the slide here again. Let’s start with how capacity is defined and what it means to have capacity. I think you did touch on this a little bit earlier, but maybe you could just expand a little bit for us.
Sure. Thanks, Nicole. Yeah, I touched on it before. I have a little more detail on this slide, and I think that the first thing I actually really want to start with is just to make sure everyone understands that capacity, the way we assess it in Canada, and most of the jurisdictions I’m aware of, really has to do with specific decisions at specific times. So, someone can be capable with respect to one type of decision and not another, or they can be capable at one time and not another, and so it’s assessed in the moment on a case by case basis.
In order to demonstrate capacity, someone needs to have had what we call informed consent, which is that they’ve been given the relevant medical facts and information about their situation and about treatments and alternatives and the impact of pursuing certain interventions versus not pursuing them. Sometimes someone with dementia may not remember all the details that they were given when they were given informed consent, but the capacity assessor can provide that information and then make sure that the patient is able to summarize and paraphrase the information. The two branches are the ability to understand the medical facts, which we talked about before, and the ability to appreciate how those facts and how that information applies to you in your own unique circumstances.
When I do capacity assessments, I usually include a full medical history and psychiatric history, and sometimes that’s done over multiple sessions and it really depends upon the individual. Generally, the assessor will ask questions to ensure that the criteria for capacity are met about understanding and appreciating. We may provide information if the person can’t remember it, or hasn’t been told it, and then make sure that they can summarize it back to us or paraphrase. We try, whenever it’s possible, to interview loved ones and other healthcare providers, but we require the patient’s consent to do that, and that gives a broader picture of the person, their life, their values, if this is consistent with who they are.
Usually, the capacity assessment isn’t done just by itself, but it goes along with an assessment for eligibility for MAID in general in the MAID context. That would involve the types of criteria under Bill C-14 that Konia mentioned earlier.
Perfect. Thanks. Then I think just adding on to this, we were going to ask about the tools that are used for capacity assessment.
Yeah, I think I’ll try to be fairly brief on this just because there are standardized tools for capacity and there are contexts where it makes sense to use them. But there’s only one that’s really been developed for MAID, and that’s the Aid to Capacity Evaluation. It’s free on the website of the Joint Center for Bioethics, but we often don’t, as assessors, use a formalized tool so much as we may use all of the criteria that are required for capacity. The most common criteria used are known as the Appelbaum Criteria, just developed my Dr. Paul Appelbaum for capacity assessment, and that involves the ability to communicate a clear choice, the ability to understand and to appreciate, and the ability to use logic and to be rational.
Those are all assessed with specific sets of questions. Some providers do like to use a specific instrument. I did want to mention the rule of the role of cognitive tests. Things like you may have heard of the Mini Mental Status Exam or the MOCA, the Montreal Cognitive Assessment. These are not capacity assessment tools. These are cognitive assessment tools, and so we use them to diagnose and follow the progress of dementia or delirium, which is more of an acute fluctuation in cognition, but we don’t use them to assess capacity. There is some research to show that below a certain score on the Mini Mental, or the Montreal Cognitive Assessment, someone is less likely to be capable, but you still have to do a capacity assessment, no matter what the score.
Thanks a lot, Justine. I think that’s great information because people often wonder exactly what that looks like. The MOCA test, it comes up quite a bit in conversations about dementia and MAID assessment, so that clarity I think is, is quite helpful for everybody. What we’re going to do now is switch gears a little bit and get to some of the audience questions that have been coming through. There are a lot about the legislation and more advocacy related questions. So, hold tight, and we will have Puneet on shortly to address some of those, but we’re going to try to have some of the questions that are more related to what the two doctors have been speaking to us about this afternoon.
One question is, is there any research that has been done, any indication on whether a person has a greater chance of Alzheimer’s if a parent or if a sibling, or both parents have had Alzheimer’s? Justine, did you want to get started with that one?
Here, Kelsey, my disclaimer is that, although I’m a psychiatrist, I’m not a geriatric psychiatrist and I don’t have all the statistics just right in my mind, but there is a genetic component with certain of dementia, Alzheimer’s being one of them. But in terms of the probability or the risk if a parent or sibling has it, I’m afraid I don’t have that on hand.
No worries. That’s okay.
Genetic test can be done in some cases to determine if someone has a heritable form of Alzheimer’s.
Absolutely. Okay, great. A question for Konia. This came up earlier in the presentation, this idea of community and how important that is for an individual with a dementia diagnosis. This is less related to assisted dying, but more so related to the quality of life piece that you were talking about. How have you seen, or do you have any information on how individuals have been handling that and maintaining a sense of community given the pandemic?
Yeah, I mean, that’s been the most difficult aspect of things. From what I’ve seen and what I’ve heard, the long-term care facilities and the geriatrics wings of the hospital have actually taken this on board and tried really hard to develop a sense of community as much as possible and that social interaction. So, some of the long-term care initiatives have been buying a set of iPads for the unit, so that the nurses at the [inaudible] can help with using that electronic communication to really help the individual in the long-term care facility still maintain contact with their loved ones.
The increased uptake of electronic means by the family themselves, and also by the care aids, LPMs and RMs in the long-term care facilities has been fantastic, and the fact that they’ve invested in those technologies has been really good. That’s what I have seen, but absolutely you’re right, that is what has been missing with the pandemic. I’m so glad that, that group of people has been vaccinated first, because that’s where the social interaction is really having a negative impact on overall general health is most in the long-term care facilities and seniors’ homes.
Thank you for that. Yeah. I’m glad to hear that. Everyone, I think, has been doing their best and trying to provide as much support as they possibly can, and that isolation factor, it’s certainly at the top of a lot of folks’ minds during what we’ve been going through the last year.
Yeah. There was a certain priority for window visits and how to do the best window visits, and that seems to be the lingo. It’s quite fascinating when they’re learning how best to do that for sure.
For sure. A question, maybe both of you could address this one, and maybe Konia if you wanted to get us started, but either of you have any information on how our laws here in Canada look similar or different to some of the other jurisdictions, mainly in relation to folks with a dementia diagnosis?
Interesting. I mean, the laws for assisted dying, the ability to access assisted dying is prevalent in the Benelux countries, so Belgium, Luxembourg, and the Netherlands. So, they have very similar laws to Canada. People can ask for an assisted death and get that in an oral way or get that intravenously in those countries. Switzerland is a little bit different. They have an oral route and an intravenous route, but the person has to initiate themselves. So, not only does the person with dementia, who could still qualify in that situation, but they have to have the capacity to drink the liquid or to start an intravenous.
So, they have to have some physical dexterity that wouldn’t apply in Canada or in the Benelux countries where we can start an intravenous for that person. The dexterity is important to retain in Switzerland and certainly in those few US States where they can get a physician assisted suicide. It’s going to be even a little more difficult, because in those states, they only have the oral option, and the physician can write a prescription for the patient to get the medication that then the patient has to prepare and take that medication themselves.
Again, there’s a dexterity function that’s required, and of course, the oral ability to swallow fluids. Most of those countries have a similar set of criteria to access MAID. The capacity part is equally important right across the world as it is here in Canada. That would be my take on that question. Justine, I don’t know if you have other thoughts about that international view.
I think your response to that was excellent. The only thing I would add is that the challenge in the US is that there’s always a six month prognosis requirement, so it’s different from our reasonably foreseeable natural death requirements. Someone must have it documented by their physician, that they are very likely not to live beyond six months. In the dementia context, this can be really difficult, because if one gets to that late stage of dementia with a six month prognosis capacity is much harder to demonstrate.
Thank you. Thank you both. That’s super helpful for our audience. We’re coming up to four o’clock Eastern in just a couple of minutes. I’m going to ask two more questions, one to each of you. The first one is for Justine. Who can be a capacity assessor in the context of related to MAID eligibility and MAID requests?
Sure, Kelsey. In Canada, a capacity assessor would need to be either a medical doctor, an MD, or a nurse practitioner, NP. Interestingly in Hawaii, psychologists can act as capacity assessors, and I think there may be a few other US states where that’s the case as well, but here it’s just an MD or a nurse practitioner.
Thank you. Then our final question, and just for now, though, folks. Please do stay on the line. We’re going to switch to an advocacy discussion in just a sec, but our final question for Konia and Justine is one for Konia. The person who’s asking is just curious about what the typical process looks like for somebody who is interested in MAID. What do they need to do? What’s the process? Generally speaking, what’s the timeline look like?
Yep. Yeah, in pretty well, every province, there is some sort of coordinating function and it depends on each province, what that is. Usually, the process is initiated by the person getting access to the application form. They submit a written request to have an assessment for assisted dying. So, a written request to have a assessment for assisted dying. That written request can be presented either to the MAID coordinating center of wherever you live. In BC, it might be to the health authority, the MAID coordinating center of that health authority. In Alberta, it might be 811, or in Ontario, it might be to that local lens. So, the MAID coordinating center, that’s who you give that form to, so your MAID request form.
You can also ask for that request form from your family physician or your specialist or your nurse practitioner. So, your primary care provider can you provide that. When that request is received, because as I said earlier, this is really considered urgent to us, then the maid coordinating center will allocate an assessor to you to have an assessment. Now, that might already be your family physician, your nurse practitioner, or your specialist, so that person will do a first assessment, and then a second assessment will be done by someone who can actually provide the assisted death for you.
So, you have two assessments done. We try really hard, if it’s an urgent situation, to do that within 10 days, if we can. But if you have a longer time period over which this assessment might be conducted, then letting your family physician know that it’s not urgent, but you want it done within the next few months. We do consider these requests urgent. During that time, the two assessors will figure out whether they need, in addition to those two assessments, capacity assessments, so that might be a third assessment. Then after that, if you are considered assessed and approved, then you can start your planning and you can decide when you want to have it, where you want to have it, and how it goes.
The timeline is usually pretty short between the time that you are assessed and approved and when you can have your death. Usually, that’s just within the realm of somewhere within a few days to a few weeks. But the important part is to have those two assessments done in a timely fashion to make sure that you are approved.
Thanks, Konia, for outlining that. I’ll just mention that if you go to the Dying With Dignity Canada website, we do have all the provincial contacts on our sites. So, if you’re looking for your local MAID care coordination team, you can find that on our website. At this time, we’re going to conclude on the education portion of today’s presentation and switch gears a bit to focus on advocacy. Big thanks to both of you, Justine and Konia for joining us today and sharing your knowledge and answering all of our questions. So, thank you so much.
It’s been a pleasure. Thank you.
You’re very welcome. Yeah, I would encourage people who have more detailed medical questions to certainly look at the CAMAP website, the Canadian Association of MAID Assessors and Providers. There’s a MAID and dementia specific article on how to do those assessments, and that publication is publicly accessible, and so I’d encourage those of you who are clinicians or healthcare workers to consider looking at this in detail, because it will give you a lot of good background. Thank you. So many thanks to all of you.
Thanks. Thank you both. Okay. We are going to switch things over now and I’m going to introduce Puneet. Well, I introduced him before, but welcome Puneet, so he’s going to speak to us about some advocacy. So, Puneet, I will turn it over to you.
Okay, great. Yeah. So, I spoke about Bill C-7 as it’s being debated in the House of Commons today. We just are learning now that the government’s request for an extension to pass new legislation to honor the Quebec decision has now been accepted and the new deadline to pass has been extended to March the 26th. The deadline as of, I don’t know, 15 minutes ago, was this Friday, and now it is March the 26th. Again, as I mentioned earlier, there’s a few key items being debated. The Sunset Clause on people whose sole condition is a mental illness is definitely a big one.
The government feels as though they need two years, during which time, they’ll study that issue more. I think one of the big issues is also, or sorry, one of the big items being debated is the idea that the parliamentary review will be starting. That’s something that I think most folks that we’ve been pushing for. It will address and study further issues around advanced requests, which is something that I know is of importance to many, many people. I get a lot of calls on that really every day, emails as well. What I can say about the comprehensive review is that there will also be other issues.
We do support taking a look further into one of the issues that’s been added to the review which is the protection of people with disability. So, there’s a lot going on, but there’s a few key amendments that we are supportive of. We are encouraging MPs to support that this bill, and once that happens, then the Senate will have to make a decision as to whether or not they will accept it as well, but it’s changing almost every day and it is progressing, but hopefully, we won’t need until the 26th of March to have this passed.
Sorry, Puneet, just speaking about that, is it possible that it could be passed before the 26th of March?
Yeah, it’s possible because there is room in the calendar to have sitting days in the House for further debate. There is a break in between, unfortunately, which I think is the week of March 15th. However, I believe they are sitting before that as well. The big question becomes, how much debate will take place in the house, and there might be members of parliament who wish to speak to the bill, and which they have every right to, but that does delay things a bit further, but it could happen before the 26th, for sure.
Thanks, Puneet. That’s helpful. For folks on the call who are anxious to see C-7 passed and want to have some engagement on that issue, is there any actions that they can take as individuals?
Yeah, great question. We encourage everyone to let their MP know right now that you want them to vote in favor of the government’s proposed response to the sentence amendments. We think that the government’s response is thoughtful. It’s been well thought out, we think. We think, unfortunately, we are disappointed with advanced requests not being in there, but that will be in the parliamentary review. But to answer the question specifically, reach out to your member of parliament and let them know that you want them to vote in favor of passing Bill C-7. Any help that I can offer with that, feel free to contact me, but the information is on our website right now under the advocacy section, and people can send letters through that too.
Thank you for that, Puneet.
You mentioned just a few moments ago, you touched on the parliamentary review. Do we have, at this point, any additional information on what that review will look like, proposed timelines? Is there any additional information or details that you can share with the audience?
Yeah, sure. The government has committed to holding the parliamentary review and initiating it within 30 days of Bill C-7 receiving royal assent. So, it could happen extremely quickly. The parliamentary review, we also know will be done by committee, but a joint committee, which means that it will include members from both the House and the Senate, and so they will take a look at that. Again, just to repeat, the parliamentary review is going to take a look at a number of issues. They are advanced requests, mature minors seeking access to MAID, mental illness, palliative care and the protection of people with disabilities. We will, as a national organization, be definitely participating and making sure our message is communicated to that review committee.
Thank you, Puneet. A question just came through. I think now’s a good time for me to say that we’re going to switch to some of the audience questions that have been coming through, both before the session, there was the option to send us your questions ahead of time, and we got quite a few, so that’s excellent, and we also have a number that have been typed in throughout the session. We’re going to switch over to take care of some of those. As mentioned, we’ll get to as many as we can, but if you do have outstanding questions, you can email us, and before we wrap up, we’ll put an email address up on the screen again for you to jot down if we can’t get to all your questions today. Puneet, can you just clarify and give a bit more information on what you mean when you say advance requests?
It was Senator Wallin, I should mention who proposed the amendment to allow for advanced requests. Advanced requests would allow someone to sign and date or request for medical assistance in dying or to receive access to medical assistance in dying before or after the diagnosis by a healthcare professional. So, it would allow to make in advance a request to receive MAID. As you know, the government did not accept that amendment, but I should mention too, that … I’m mentioning this because advanced consent and advanced requests are often confused.
I do want to point out that Bill C-7 has, since I’ve been here and continues to have included within it now, advanced consent and the waiver to, or the opportunity to waive that. I do want to let folks know that the fear of not being able to provide consent at the time of the MAID procedure can be overcome with the opportunity to waive final consent if you do that in conjunction with your doctor, as well as making sure that … I’ll leave it at that, but I do want to make sure that people understand that advanced consent is currently in the bill being debated right now.
Thank you, Puneet. You mentioned that we just got word that the government was granted an extension and the new due date for the new law C-7 is March 26th instead of tomorrow, February 26th. The question is, if everything comes into effect on the 26th and the new law C-7 is ready to go at that point in time, is there any delay before that eligibility requirement becomes the eligibility requirement, or if it’s passed and in place on the 26th of March, is that the day when people can then use that eligibility criteria?
Right. The date that we are concerned with is the 26th of March, because that’s the deadline to pass Bill C-7. That is one deadline, but really, and so what would happen, if Bill C-7 was not passed by the deadline, then we would essentially have two laws in Canada. One in Quebec that this whole C-7 is based around and the federal legislation. That is one of the key dates that we have to remember. However, we also have to remember the date of royal assent. When it receives royal assent by the government is when things can proceed from that point on as official, I suppose.
Thank you for clarifying that. This question comes up quite a bit, not just today with the webinar, but in general, and it’s a question about, even though at this point in time, at least advanced requests aren’t allowed, and there’s also no option to have something in your living will honored at this point in time since a substitute decision maker can’t make that decision for MAID on your behalf, and at least today, you need to have capacity at the time of your MAID death. People are wondering if they can still write their support for MAID in their will.
Maybe Nicole and I can take that one on just because we have received this question quite a bit. So, individuals, if you are supportive of MAID, if it is something that you want to put in a living will the opinion that we’ve received is that, that’s okay, you can put it in as something that you’re supportive of, but also understanding that there’s no way, at this point in time that that requirement, or sorry, that addition to your living will, or advanced care plan would be honored because it is not something that is permitted under the current law.
Although we don’t know what advanced requests will look like if they are an option down the road, it is quite unlikely that something that’s written in a living will from 1980 is then going to be what allows someone to move forward with an assisted death at this point in time. So, it’s very likely that it would be a very different process, a very involved process that looks a little bit different than what just writing it in a living will or an advanced care plan. We’ll move on then. There’s some other questions coming through about the amendments, Puneet.
If you have a little more sort of history or information on how those amendments have come to be and sort of the interaction between the Senate and the House.
Sure. That’s a good question, and it can get extremely confusing because of the timing of the Senate’s proposed amendments and then the government sort of out of the blue, at least it seemed to me, responding to those amendments. We’ll back up for a second and remember that essentially the Senate, when it returned the bill back to the House of Commons, it essentially included five amendments. Where we are right now is that the government in the House of Commons has responded and said that we are rejecting some of your amendments, and we are accepting some of your amendments and making modifications.
As I mentioned, the advanced request was rejected but will be included in the parliamentary review. There is one that may be of interest to this audience, and there’s a lot of confusion around it. The amendment originally from the Senate, one of them included something in Bill C-7 that would make it clear, and I’ll read this for you, that would make it clear that the mental illness exclusion does not apply to people with neurocognitive disorders (Alzheimer’s, dementia, Parkinson’s, Huntington’s). The government rejected that amendment.
Now, the government rejecting that amendment does not mean there’s any change to what is the case, and what is the case is that people with those conditions can access MAID as long as they have the capacity to consent, as was discussed earlier. Right? The minister of justice has also made it clear that there was never any intention to exclude those people. The confusion or the need to … The rationale behind the push to include it, this clarifying language in the legislation, was because some people do consider these conditions to be mental illness conditions, and therefore the exclusion on people whose sole condition is a mental illness would apply to them. That’s not the case.
I do want people to understand that, that’s not the case. As I said, people with these conditions can seek access to MAID, can be found eligible to receive MAID, but they just are not putting that in the legislation. I hope that helps.
Absolutely. Thank you, Pete. That’s that’s great. Just going through some of the other questions that came through here, and again, just to reiterate folks, we do see some questions coming through that are personal in nature and related to your individual or a loved one’s individual healthcare journey. If you are looking for support, Nicole and I can certainly let you know about resources in your community. So, do email us, as mentioned, we’ll put that email address up before we wrap up for today.
But we do want to give you those supports, but we’ll just do that on a one-on-one basis. Someone sent in a reminder just related to the question about advanced care planning, and just a reminder that that’s not something that you write and then forget about for many years. It is something you want to revisit and potentially edit, depending on what’s going on with your health and your life quite often. That’s a great reminder for all of us. We do have some resources on our website as well, including advanced care planning kits and some webinars related to advanced care planning.
Certainly check those out if you’re looking for some additional support there. Another question for Puneet, what are the objections to advance requests for MAID? Are there any reasons why people are not wanting advanced requests, or what’s the status there?
Well, I know very clearly that the people, our supporters are clearly in favor of advance requests. Canadians are in favor of advanced requests. Take a look at the numbers out on the Ipsos poll. Very clearly, there is strong support for advanced request to be included in Canada’s MAID legislation however, and this is just simply repeating what the minister has said, but the minister felt that expanding advanced requests would go beyond the scope of the bill, and that it’s better to be studied during the parliamentary review.
This is not to defend any position by anyone in the government, but advanced requests were always going to be addressed within the parliamentary review. The fact that they made it to debate, I think is a great sign, and so we will be doing our part again as a national organization to let the government know, to let the joint committee know that advanced requests are what Canadians want.
Thank you for clarifying that, Puneet. We do have a question that came through, and this one is more so related to MAID provisions and MAID scenarios. I’m not a MAID provider, but I can answer this one, so I’ll provide this information. A person is asking, what if somebody has dementia and they go through their two assessments and then they lose capacity before the date that they’ve set for a MAID? If a person who was scheduled to access MAID on Friday and something happened before then, and they no longer had capacity, what would happen?
Under the current law, C-14, the law that we have in place today, that person would not be able to move forward with me because they don’t have that capacity that is required in the law. That’s a big part of the discussion going on now with the removal of late stage consent that’s proposed under C-7, as well as the issue of advanced requests, which is, as Puneet said, something that will be looked at in the months to come. The key year to keep in mind is that capacity is required currently at the moment of the person’s death, as well as during those assessments.
There’s also some information on our website about some of those pieces as well, and other resources. Another question, maybe Puneet, I think we have time for this one, it might be our last question, but can you provide explanation of the differences between advanced requests and advanced consent? So, looking at Audrey’s amendment and the advanced request piece that is going to be looked at later this year.
Sure. Between advanced request and advanced consent, so again, advanced consent is currently being or is included in Bill C-7. Advanced consent again is named after … It’s also known as Audrey’s amendment. Audrey Parker was a woman who was assessed and approved for MAID, had set a date, but she was very fearful of not being able to provide consent as the law requires at the time of the MAID procedure. All she wanted to do was, I think everyone knows this story, wanted to spend another Christmas time with her family.
But because of that fear that she had, she ended up dying earlier than she wanted to, and she didn’t get that last Christmas with her family. That is something that is being proposed in Bill C-7, which is being debated on, to include advanced consent. Part of Senator Wallin’s amendment around advanced request included an expansion of advanced consent, because right now, it would only be available to people whose death is reasonably foreseeable. The senator’s amendment around advanced request included sort of, I guess a sub part around expanding advanced consent to people whose death is not reasonably foreseeable, but as I mentioned earlier, that was rejected.
An advanced request would simply allow someone to make a request for, and to receive MAID prior to a diagnosis, and so that would help people who could have, or who have a history of certain forms of dementia, or not certain forms, but of dementia in their family and would want to indicate their wishes to receive medical assistance in dying upon that diagnosis. Those are issues that are being debated right now, but the advanced request part will be studied further in the parliamentary review.
Thanks Puneet. As we learn more as an organization, we will be updating our supporters over email, so make sure you’re signed up to receive our emails, and also you can check out our website for updates as well as our social media platforms, where we’ll be posting as we learn more. I think we will start to wrap up now. So, thank you, Puneet, for giving all of your information and guidance and answering our questions about the legislation and what’s going on with Bill C-7.
When you exit out of today’s webinar, you will receive a participant survey. Please, if you’d like to fill that out, it will give us feedback on how to do and what to do in terms of topics for other sessions, so please fill that out. Again, on the screen there, you can see our email address. If your questions did not get answered today, or if you had questions about a personal situation about yourself or a loved one and you would like some support, you can email us there, firstname.lastname@example.org, or you can call us toll free at the number on the screen.
Once again, thank you all for joining us today, and thank you to all of our speakers who came on and presented, and again, to all of you for joining us, and we will see you next month. Thanks very much everyone. Bye-bye.