Bringing up MAID in Canada

Speakers:

Caroline Variath is a PhD candidate in nursing with a collaborative specialization in bioethics at the University of Toronto. Currently, she is a professor of nursing at Humber College. She has over 15 years of clinical experience in acute and critical care settings. She has also been a part of medical assistance in dying team and palliative care teams. The challenges she encountered in practice with end-of-life care, especially while caring for those who are unable to make their own decisions, prompted her research interests. Her Ph.D. thesis focuses on experiences with the loss of capacity to consent and access to medical assistance in dying in Canada. Through her work, she aims to improve end-of-life care planning and the experiences of patients, their family members and healthcare providers with death. 

Dr. Tanja Daws is a family physician in the Comox Valley, BC. She graduated from The University of Pretoria, South Africa and relocated to Canada in 2009. She was one of the first MAID providers in BC and a founding member of The Canadian Association of MAID Assessors and Providers (CAMAP). She is a clinical instructor in Family Medicine at UBC.

Good afternoon and welcome. My name is Nicole Curtis, and I’m Dying with Dignity Canada’s Program Specialist, and I’m joined today by my colleagues, Kelsey Goforth and Samantha Shier. Before we begin, I want to acknowledge that I am a white settler speaking to you from the traditional territory of many nations, including the Mississaugas of the Credit, the Anishinaabe, the Chippewa, the Haudenosaunee and the Wendat peoples that is now home to many diverse first nations. I also want to acknowledge that Toronto is covered by Treaty 13 with the Mississaugas of the Credit. We encourage you to do your own research on the land in which you’re meeting with us on today.

I’m thrilled to welcome you today to the ninth session of Dying with Dignity Canada’s online conference, Reflections on Death and Dying. The first month of our conference was such a success, and you can find the recordings to some of the sessions posted on the Dying with Dignity Canada website, and we’ll put the link in the chat so that you can go take a look at those after today’s session. We will continue to meet throughout January, and we will be presenting on a range of topics related to death and dying. If you haven’t done so already, all our sessions and their registration links can be found on our website. Again, the link is in the chat and the next session is 10 things to know about MAiD in Canada with Jocelyn Downie. So again, go check out the chat right now, the links are there, so you can watch the recordings and register for the upcoming sessions.

So before I welcome today’s presenters, I’d like to go over a few housekeeping items. Everyone on the call today is muted. However, there will be opportunities to submit questions. To do so, please type your questions into the question bar on the Zoom side panel, and we will read it out for you at the end. Please try to keep your question as concise and clear as possible. While we’re going to try to get to as many of your questions as possible, unfortunately, we may not get to everyone. So if you do have any outstanding questions following the webinar or any questions that are quite personal in nature, please contact us at support@dyingwithdignity.ca and we will follow up with you individually. We will also be sending out a post webinar survey that will pop up on your screen after the webinar. It will give you the opportunity to share your feedback.

We are also recording today’s session, so you will be able to watch it again later, and there’s no need to worry about taking any notes. So now, to introduce today’s speakers, we have Caroline Variath, who is a PhD candidate in nursing with a collaborative specialization in bioethics at the University of Toronto. She’s currently a professor of nursing at Humber College. Caroline has over 15 years of clinical experience in acute and critical care setting. Through her work, she aims to improve end of life care, planning and the experiences of patients, their family members, and their healthcare providers with death. Also joining us today is Dr. Tanja Daws, who is a family physician in Comox Valley, BC. She was one of the first MAiD providers in BC and is a founding member of the Canadian Association of MAiD Assessors and Providers. She is also a clinical instructor in family medicine at UBC. So welcome to both of you. Thank you for being here. And I will now pass it over to Kelsey who will get us started.

Thanks, Nicole. And thank you so much to everyone joining us this afternoon. So we’re going to get started with a bit of a discussion first about informed consent. So Caroline, I’m wondering if you could tell us a little bit about informed consent and what that entails.

Thank you, Kelsey, for the question, thank you for having me. I’m so glad that so many of you have joined us today to take some time out and to listen to what we have to say. And so informed consent is a process of requesting and providing consent. And that process is similar across Canada. For any treatment, healthcare providers are required to ask for consent from patients. Some consent may be implied such as when you walk into a clinician’s office and you have some ailments and you may ask you questions about them and that would be an implied consent situation. Whereas others are more explicit where you would have to provide a written or verbal consent as in the case of a blood transfusion or in MAiD with MAiD. So what the elements of informed consent? It must relate to the treatment that is being offered.

The consent sheet must be, and the consent must be voluntarily provided. It must not be obtained through misrepresentation or fraud, and it must be informed. So what does informed consent mean? Healthcare providers should provide information about the condition for which that healthcare is being proposed, the nature of the proposed healthcare, the risks and benefits of the proposed healthcare, alternative courses of the healthcare that’s being proposed, as well as the providing the patient an opportunity to ask questions and receive answers about the proposed treatment.

And finally, adults or these patients must be capable of making a decision and providing that consent. And so they have to have the capacity to consent. And what does capacity mean? It is the patient’s ability to understand the information that’s relevant to make that decision, as well as the ability to appreciate the reasonably foreseeable consequences of that decision or lack thereof. And that determination is made by the healthcare provider, who’s offering the patient that treatment. And so that in a nutshell are the components of consent.

Thanks you so much for getting us started with that. Now Tanja, I’m going to turn to you and as a founding member of CAMAP, I’m wondering if you could tell us a little bit more about the organization and what it does, as well as their stance on informed consent when it comes to medical assistance in dying.

Thank you for having me today. So CAMAP is a national organization, which is the first of its kind in the world. Started five years ago by the first group of MAiD providers in BC and that growing international organization with the goal of supporting physicians and nurse practitioners who do the MAiD work. In the meantime, we also incorporate the legal persons, MAiD coordinations which is same to staff, speech and language pathologists and all other healthcare providers who may play a role for patients during that MAiD journey. And CAMAP over the last five of years has become the leading body of expertise on MAiD in Canada. So not only do we provide education to members and other medical professionals, we give some information to the public, but we also actually, and that’s a very important job is to set standards and guidelines for the practice of MAiD to ensure very high and effective standards and standardization across the country way possible.

We also do education and a few other projects with other organizations where our expertise as they need it. So in 2019, CAMAP actually published a guidance paper on our stance on informed consent and how to bring up MAiD as a clinical care option to patients. And the document for those who would like to read the full document is on the camapcandidate.ca website under a tab called CAMAP applications. It’s a long document. In summary, we advocated that it should be a standard for patients to receive all their care options when having a treatment plan formulated by the physician or nurse practitioner and all the options includes MAiD if that is relevant to the patient’s situation.

And that will then take into account the medical clinical situation of the patient, as well as the patient’s values. This should however only be done for patients who are likely to qualify. The person may not know assessing them for the treat plan, whether they will actually qualify or not. And that will eventually be the job of the MAiD assessors. But if they may qualify and if they have capacity to make those kind of medical decisions, it should be offered as part of the bigger treatment plan, unless it is clear that it would contradict with the patient’s very clear rights and values. And that would be part of the risk assessment that the person would have to make before bringing up MAiD as an option.

If the clinician who is taking care of the patient has conscientious objection against MAiD, it does not absolve them from the responsibility of offering it as an option. They have to actually have further duties activate to ensure that then somebody else could do that part of the written plan to make sure it’s a viable option to that person.

Thanks so much. And you just touched on this a little bit at the end of your answer there, but what some folks have reported is that there seems to be some hesitancy among healthcare providers when it comes to even discussing MAiD. And you touched on some of those obligations. So it seems that healthcare professionals are permitted to initiate those discussions with MAiD with their patients. Is that right and can you explain that a little more?

So most often, a treat plan would be formulated by a patient’s physician or nurse practitioner, but any other healthcare provider that is involved in their care and has a therapeutic relationship with that patient is allowed to speak on MAiD. And I’m going to actually quote the section from the law, because it was actually written explicitly to give that confirmation. So in BLC 14 in section 5.1, it was written that for greatest certainty, no social workers, psychologists, psychiatrists, therapists, which is a very vague term, medical practitioner, nurse practitioner, or other healthcare professional commits an offense if they provide information to a person on the lawful provision of medical assistance in dying.

It remains a crime for any person, irrespective of healthcare workers, to try to convince the patient to commit suicide or to assist them. But bringing up MAiD which is the medical treatment option in the medical context of a person’s care options is not the same as counseling suicide. And if one understands that legal differentiation, it makes it clear that as long as there’s a relationship between the healthcare worker and the patient and the respectful mutual values, that a discussion is simply a medical discussion about treatment.

Thanks so much. Caroline, we’ll go over to you now and a similar question, but more so interested in your answer from your background in bioethics. So from a bioethics perspective, what do you consider to be the responsibilities of healthcare providers when it comes to bringing up MAiD?

Yeah. So thank you, Kelsey. And I think Tanja touched on a few of things that I was going to talk about, but it’s okay, I’m talking about it from a bioethics perspective. So there are a few principles and concepts of bioethics that are important to consider here and most important is a patient autonomy and the patient’s right to make an informed decision. It is important to provide the patient information about all end of life options, including MAiD and palliative care, their benefits and drawbacks in order for patients to make an informed decision. For example, a patient who chooses MAiD may not be aware of the benefits of palliative care and whether the quality of life that palliative care can offer would align with their values and wishes. And similarly, while others may choose palliative care may not be aware of MAiD.

I’ve heard patients, this was an early days though, say to me that they wish that euthanasia was available here in Canada as it is in Switzerland, because they were not aware that MAiD was legalized in Canada. And so some patients may not be able to have that access or information about MAiD or the resources to know about MAiD as others do. And so that is a barrier in terms of them knowing about this healthcare option that they may have access to. There are other barriers to free flow of information about MAiD and this is what Tanja touched on earlier. And this is from the perspectives of the healthcare provider, they may experience moral conflict, and this may be due to their professional obligations or perceived lack of support. For example, some healthcare providers may support me and may believe that patients have a right to know and make an informed decision, but they may be fearful about the legal and professional ramifications about bringing up MAiD.

And so this may be just a clause in the MAiD legislation that states, as Tanja said earlier, that it is illegal to counsel a person to die by suicide. And many believe that providing information about need without the patient themselves bringing it up may be viewed as counseling. Their hesitancy may also come from a lack of support from professional organizations or stakeholders and leadership of the institutions that healthcare providers work for. Therefore, they may not bring it up, but they may experience moral distress in not doing so because they may be in support of patients access to MAiD. Other healthcare providers on the other hand may be conscientious objectors and they may choose not to participate in MAiD. And some may even be conflicted when a patient requests for MAiD and they have to provide a referral as they believe in doing so they have actively participated in MAiD.

However, all healthcare providers have responsibility to ensure, and this is that another concept here of, to ensure equitable access to a treatment option that’s legally available to eligible patients in Canada. And so for healthcare providers, I believe this includes learning about MAiD and its current eligibility requirements in safeguards. If one is not comfortable to bring up MAiD along with other end of life treatment options, then to request someone who may be willing to provide a patient who may be eligible that information.

Healthcare providers should refer patients to other practitioners who are willing to provide MAiD if a request comes their way and they are conscientious objectors. Most importantly though, healthcare providers should not obstruct patients from accessing MAiD or impose their values and beliefs onto those of the patients and their families. And finally, in order to bring up MAiD and to establish this equitable access to MAiD, it really requires resources. And I believe our healthcare providers are already doing that, but there is some responsibility to advocate for an increased access to end of life care to in remote locations and other areas with minimal access to healthcare in Canada as there is quite a discrepancy in access to healthcare, especially end of life care in Canada. So those are some responsibilities from a bioethics perspective about MAiD for healthcare providers.

Okay. Thank you. So Tanja, correct me if I’m wrong here, but the read on the CAMAP guidance is that the responsibilities will look a little different if it is likely that the person is at a point where MAiD might be a reasonable option for them. So if that’s the case, what difference would that look like? If somebody is likely eligible for MAiD, what are those responsibilities and professional obligations and how would maybe an appointment with a clinician look if somebody’s in that situation?

So that is in essence the hardest part is to know when to talk to a patient about MAiD in practice, right? And I would say that it mostly falls under the primary care provider, which is the physician or [inaudible 00:16:53] nurse practitioner, but the same applies to medical specialists. And I think the first important concept is one has to have a good relationship with a patient to know them as a human and to have had not just in illness, but in good health, two discussions about advanced care planning and just understanding people’s general values because that will actually guide all other treatments and not just treatment at end of life.

So if one has a basis where the patient is known to the provider and vice versa, their values are known and the illness is talked about in an open way which, by the way, most people prefer is to have very candid frank conversations about the illness and prognosis with the exception of very few patients who prefer to operate perhaps more out of a denial standpoint, not really wanting to know the hurtful truth. But in those kind of relationships, it makes it much safer and less risky for physicians to ask patients, “Would you like me?” And that’s what I do in my practice. I would say to patients, “Would you want me to bring up MAiD as an option down the road with this illness if you start telling me that this is too hard for you.” So I’m not actually bringing up MAiD at the wrong time, which is a risk, right? Because legally you can harm a patient and mentally harm them.

And we’re especially sensitive now with prac two with patients with disabilities, not to fall in a fear mongering track that state out that we will make people with vulnerability feel like their lives are worthless. So the question is more a theoretical question like what are your values around end of life and would you want MAiD offered it as an option to you in the future. Given that that may change for patients as the circumstances change, but you will then at least identify who would never consider MAiD as an option and make a note maintained on your file that that person will probably not want MAiD mentioned to them. You could make the assumption that that can change too and it will be easy enough to verify that, but it will save some of the harm of bringing up MAiD to a person who would maybe morally be hurt or offended by that option.

But for the majority of patients as one discusses the treatment plan, and there’s an excellent tool used in medicine called the serious illness conversation. That one talks to patients about how they perceive their illness, how it’s affecting them, what can they tolerate and what is negotiable as they’re sustained for losses of quality of life or function and at which point would there be insurmountable challenges that would then activate more end of life care planning and then one can pit stop and check in from time to time when it’s the right time for them to talk about MAiD.

And it’s very different for different people. We would typically never bring it up just after fresh, let’s say, cancer diagnosis. But if the patient at that point in time wants to know what’s the worst case scenario, then it’s a quick mention that assisted dying would be an option if there are fearful of the dying process or the suffering. But we don’t usually go into more detail, but say, I’m happy to talk of about that later. And some patients with chronic illness such as ALA or Parkinson’s or organ failures, they often check in with us to say, what do I do down the road? And they just reassure it to know that, yes, I will be happy to discuss MAiD with you when you are ready for that discussion. And knowing that it’s available relieves a significant amount of anxiety that people have while they are still planning to actually participate in active treatment and may live for years still with their illness.

Thank you. And so as a MAiD provider, these are discussions that you’re having with your patients. Do you have any observations or anything you’ve heard from colleagues who aren’t MAiD providers? Is it the case that more primary care providers are being more open about end of life options or just anything you can share about what the conversations look like?

So I think in society as a whole, we’re busy normalizing death and we’re talking about death more. The typical elephant in the room, instead of ignoring it, we are now talking about it more and more. And that goes for all physicians, whether they are in favor of MAiD or not. We do see over the last five years that there has been a significant increase in the comfort of physicians and nurse practitioners to talk about not just dying, palliative care as well and they naturally MAiD. And as soon as a physician has had one patient that asked about MAiD or had a consultation, we make lots of long, big fat notes and we send that back to them. Once they read all that information, I think it serves as in part educating our own colleagues. And as they had patients go through a MAiD journey, they’ve learned so much about what MAiD is really about and not just what they thought or feared it would be that you can see then it then becomes easier for them to have those conversations with patients.

And we’ve seen a softening over the five years of the way physicians started and nurse practitioners being more hesitant. There being a lot more conscientious subjection five years ago than now because some of the things people feared like the slippery slope and people will be MAiDed without their permission, all those things did not realize. And they’ve seen that it’s an ultimately compassionate service totally honoring the patient and the patient’s values. And over time, some physicians that identified as objectives five years ago, they then started having more conversations, have done referrals. Some have actually even been present at MAiD procedures for patients and one or two have even become MAiD ascesis which to us were mind blowing because we did not expect that to happen. And even the physicians who retain especially religious moral objection have sort of like embraced the patients side of the story.

They are safe and we are protecting as well and respecting their objection. And I think seeing that from MAiD providers respecting them and not putting undue pressure on them to do things they’re not comfortable with, over time they have also come a bit to the middle still having their moral objection, but willing to still take care of the patient until death. And some of them now would like to receive our documents instead of just learning which date is the patient expected to pass away. So we’ve seen a growth in the acceptance for physicians to be involved even if there are objectives.

Thank you. So it sounds like a lot has changed in recent years for the better with people just being more willing to learn about different end of life options and actually discuss them. So that’s great. Next question is for Caroline. And so we’ve been talking a lot about transparency when it comes to clinicians talking to their patients about what might be an option for them. So I’m wondering if you could speak to what if any difference it makes for the MAiD patient and their support people, their friends, their family, when healthcare providers are transparent about the possibility of MAiD. You’re muted.

That’s my first one this year. As I had mentioned earlier, being transparent about MAiD along with other end of life options available to patients allows patients to make that autonomous informed decision. In some of the studies that I’ve been a part of that focused on MAiD, healthcare providers indicated that patients who are eligible for MAiD often asks for MAiD too late in their end of life trajectory resulting in having to expedite MAiD or in eligibility because patients have already lost capacity. This can be distressing of course, to the patient, the families, as well as the healthcare providers. And so such situations can be avoided with early discussions about all options, including MAiD that is available to eligible patients or patients who may be eligible. In some studies, participants have also commented on how patients have an improved sense of or quality of life after being having found being eligible for MAiD.

And they regained some of their control at that end of life. And this may allow patients to better prepare for their deaths and some time to sort out their personal and financial affairs and regardless of whether they may choose to go through with MAiD or not. As for family members and support people, having this information can help them prepare for the MAiD death and to come to terms with their patient’s decision. And beyond providing information about MAiD, I also believe it is important to those who are involved in a patient’s MAiD process to be provided information about bereavement supports and supports for them after their loved one’s death in order to avoid prolonged or complicated grief. On the flip side, I know Tanja sort of mentioned this as well, it is important that healthcare providers be careful not to bring up MAiD with those who might not be eligible for it.

Okay. Thank you. So I think in an ideal world, everybody would have a wonderful relationship with their healthcare provider and would feel entirely comfortable bringing up whatever it is that’s on their mind, whether it’s end of life or not. But we do encounter some individuals who come to us saying I’m just not comfortable bringing up MAiD with my doctor or my nurse practitioner. So I’m wondering if we can have a bit of a discussion about effective referrals and what people can and should do, what their rights look like if they don’t want to speak to their primary care provider or want to seek another opinion or just another conversation. So Caroline, can you explain what effective referrals are and a little bit about what the rules are here in Ontario and then Tanja, if you want to jump in with some information about BC, that would be fantastic.

Yeah. So in Ontario, effective referrals means referrals made in good faiths to a non-objecting available accessible physician, nurse practitioner, or MAiD teams. And this is applicable to all healthcare providers who may receive a request for MAiD or may have to take care of a patient who has requested and is awaiting MAiD and they are conscientious objectives of MAiD. And so clinicians who are unwilling to assess or provide MAiD can either make a referral using their own professional networks or institutional policies, or they can use a care coordinators coordination service that’s available in Ontario. And this service is available 24/7 and, or make referrals or use a referral service that’s also available from Monday to Friday in Ontario. And this information is readily available on the Ministry of Health website here in Ontario.

So in BC, we have a bit of a softer approach. So Ontario’s referral system was due to a court case that mandated referrals, which the healthcare providers who object feel means that they have a forced referral system. So in BC, the view is a bit softer that our college recommends what they call an effective transfer of care. So what that really entails is if a physician or nurse practitioner who helps a conscientious objection has a MAiD request, or just a patient who asks for information that they typically anyways can’t provide because their knowledge of MAiD is usually actually not very extensive, not being involved in it, they have to make sure that they offer to that person to see another healthcare provider or a MAiD coordination center for information. Now, they do not have to create a physical referral. They can just give them the name or the phone number on a slip of paper.

And some of our conscientious subjecting colleagues have made the process as a low barrier as possible. For instance, saying just quickly ask my receptionist to book me with my colleague, Dr. So-and-So is happy to discuss that with you. So it’s forced referral or a formal referral, and some people just get the name of the MAiD coordination center or just Google it on their health authority website. But indirectly, most people will be able to land some way where they will receive a lot more information. It is for some patients so difficult to negotiate that they need to be able to telephone or use the internet. And there could be gaps in that.

And luckily in BC, we accept people self referring. So if people see my or my colleagues name on the internet, or they have gone to a town or meeting that we’ve held publicly, or they phone their health authority, they can even phone us and we will happily meet with them because we understand that most people just want good quality information, which they could not have gotten enough of and a health authority for instance has a brilliant MAiD coordination team with a website, with brochures. So as long as those people can advocate for themselves and reach information by themselves, they will get some way.

There’s always the concern about people who don’t have computers, have phones, are homeless, and those populations are not always well covered or will have good access, although they are also not the typical MAiD client to start with. So most people will have good access at least. We have seen also that there has been that softening in the hesitancy of objecting physicians to refer. And what has actually happened also is the BC college rule says that the patient cannot be abandoned at any point in their care, but what has actually perversely happened is that patients often will abandon these physicians. So we found that if there are patients who see physicians who are uncomfortable either talking about MAiD or health firm objection towards MAiD in total, that those patients will get in contact with the MAiD service, they will be enrolled, they will have assessments. And when we then ask them about their medical care for let’s say their pain control or the bleeding, they will then admit that they’re either not contacting their primary care physician anymore, that they’re going to walk-in clinics, or they’re just not getting the care and managing themselves.

So we often end up taking over their care and becoming their primary caregivers as well. But I thought it was quite interesting that they actually even abandon their physicians. And we found the same happening with facilities who do not allow MAiD onsite, such as hospice and out of town. People actually avoid actively in hospice admission. They much prefer to then stay at home and have MAiD down the road when they can’t tolerate the suffering anymore, but they actually will hesitate to go to hospice specifically because of that policy. So that’s been an unexpected turn of that outcome.

Thank you for that. So we’re going to focus a bit more on some of the patient related pieces. So first question is for Tanja. So how should a patient bring up MAiD with their primary care provider? Is there an ideal time to do it? Should they wait and see if their provider brings it up for them? Any tips or suggestion you have there?

So it’s actually quite fascinating, Kelsey, to talk about that, right? So I would say the correct answer is the patient should ask about MAiD when they want information, whether that be 10 years down the road, before they expected to have a serious illness as a value statement. And I find that some patients do say to me, “Hey doc, if down the road something happens, I want you to give me MAiD.” And I’m like, whoa, I didn’t see that coming. And then some patients with a diagnosis of a bad illness like ALAs will say, when this gets bad, especially if they have of a family member with a bad outcome in death and dying would say that down the road, I would want you to help me that way, right? But then there are patients that I have seen for more than a decade as a family physician and trust me, I live in a small town and our town has been very vocal about MAiD because our hospital hospice was a Catholic facility who did not allow MAiD.

So there was enormous public debate with public town halls and newspaper articles weeks and weeks in a row. And despite that, I still have patients who do not know that I am involved in MAiD. And I had a 90-year old feisty lady a few years ago wave a finger at me and pick up a fight really just to say that she just wants to let me know that down the road, because she had a cancer, she would expect me to offer her MAiD and talk about it because she was anticipating that I would not do it. And I was like, “No, I’m actually a MAiD provider. I would be happy to talk to you about it.” And at the same time, I had to ensure patients who do not want MAiD that they will not get any MAiD from me, they will get all the family amenities in palliative care. But if they values me not having MAiD, that will not be on the table for them.

So it depends on the knowledge of the patient and their need as well as where they are in their illness. So we do see that a lot of people still get referred very late. Despite having physicians who are supportive of MAiD and would be happy to talk about it, they also did not ask. And sometimes medically, there was just something that went wrong. They ended up in some kind of a crisis or there was a complication from the illness and they may not have considered MAiD until that point.

I’ll give you an example. A patient with lung cancer, with metastasis to the spine may have been kept quite comfortable, had a good quality of life, was maybe still having palliative chemotherapy, but the moment they have a spine fracture or they become paralyzed due to that spine involvement, at that point, they become a paraplegic and then they may go, “Oh, now I can’t get out of bed. Now I can’t do this.” So now the quality of life is questionable and it’s the cancer is clearly advance, now they may ask for MAiD. But they may, at that point, be hospitalized which is still a bit of a crisis.

So I always recommend to people, talk about it when you want to talk about it, when it’s important to you, because physicians are busy unfortunately. And we think about you when you are there, but if you’re not there, we don’t think about you all the time. And I know that may sound a bit wild, but we’re in a pandemic as well, right? We are quite busy and some patients don’t understand always the makings behind the scenes. So we may have just seen somebody for their heart failure, diabetes, high blood pressure, in grown toe nail, and then they want to suddenly talk about their cancer and MAiD and we’re like, “Ooh.” We literally don’t have time to have a good, solid discussion. And they may feel brushed off and actually all that should have been happening is saying, we both would like to talk about this, but how about we make another appointment, so we have ample time to have a very thorough discussion?

So I think the patient needs to have information when they need it. And physicians are happy to supply it as long as they don’t have objection at whatever point that may be deemed feasible for that person. I have seen patients who in excess of three years up to this point following people up for emphysema or dementia. And initially we thought we would see MAiD patients maybe for a few months, maybe maximum a year. And I asked those patients when I see them for more than a year, is this beneficial to you? Because obviously you are living longer than we anticipated number one, or number two, you came very early because you had very early needs for information.

And they all tell me that they would continue to want to see me even though it’s long before they will have MAiD down the road, because it gives them the reassurance that they will be safe and it makes the anxiety less. So we are happy to follow people for as long as we have to. And they may not even end up having MAiDed down the road, but if the benefit is just reducing anxiety and because we work with the primary care persons and we work with palliative care, if they have comfort in dying, they don’t need MAiD. So only about 50% of our patients end up completing a procedure from all those that we saw in consultations.

Thanks, Tanja. That’s helpful. So Caroline turning to you, do you have any recommendations for how to make the conversation easier for the patient? And I think Tanja’s point was great about actually having the time and setting aside an appointment so it’s not rushed and we know this is what we’re talking about and everybody’s prepared and it’s that special time to actually ask the questions and get all the information, but is there something that the patient can do on their end, anything they can do to prepare, and then any additional ways that the healthcare providers can create an open environment for these discussions?

Yeah. Thank you. Thank you, Tanja. I think Tanja covered a lot of the story, but it’s a great question. And many of you who are here today are here because of your interest in planning your end of life or helping others or yourselves plan or prepare for others end of life. And I believe you are already taking the right steps. And the reason I say this is because of my belief that our society, while we’re getting better, has unfortunately shied away from the concept of death and dying. Healthcare in general often focuses on curing and prolonging life and therefore, most patients and healthcare providers focus their conversations on treatments and ways to prolong life. But I believe it’s vital for patients to discuss their values, their wishes, as well as quality of life and what that means to them with their healthcare providers. And such discussions will lay the foundation for end of life conversations.

As I mentioned before, some healthcare providers might find it challenging to talk about MAiD with their patients in fear of being perceived as counseling or not knowing how the patient may receive such information. If patients themselves provide some indiction that MAiD might be something that they would consider, the conversations become easier to have as Tanja had mentioned earlier. When one is in the trajectory towards end of life, such conversations are even more vital. Decisions or discussions should include, as I mentioned earlier, the concept of quality of life and what that means to the patient, keeping in mind that this may evolve over time, as well as concerns about suffering and both physical and existential, fears about death, as well as options available to the patient while they’re nearing their end of life. This will help in establishing healthcare goals.

And some healthcare practitioners are better at having these conversations than others. If patients are not comfortable with having these conversations with the primary care providers, they can ask for others to be involved in their care, such as a palliative care team, especially when they are towards their end of life. As for healthcare providers, they should actively seek opportunity for advanced care planning and creating space for patients to talk about their end of life wishes and needs. I also believe it’s important to improve end of life education, including effective communication about end of life care planning for all healthcare professionals. As a responsibility, we should also rely with those who do it well and some healthcare specialties or teams such as the palliative care team. I hope this answered the question or that was helpful.

Yes, absolutely. That was great. Thank you. Tanja, do you have any advice for what to do if someone has a conversation with their doctor about MAiD and it doesn’t go well, so the clinician just kind of shuts down the conversations. So any advice about what to do about the MAiD piece and wanting to get that information and then even what happens with the clinical relationship after that?

So I think the greatest obstacle patients face is that power differential between physicians and patients, which I think is probably a little bit less with nurse practitioners, but that is probably the biggest barrier. And then people fear having an angry doctor that then may not take care of them afterwards if they do something wrong, right? I think that’s reducing over the years as the patriarchal processes are lesser then we have a more patient standard approach. I always say, if people start from a place of respect in a good relationship, not that much can go wrong compared to if there’s no relationship and no commonality. And I always tell my patients, tell me what you need, right? And you can just say, “I need today to hear more about MAiD, or tell me more about this.” We are happy to go there, right?

Now, I can understand that if physicians have conscientious objection, that that may be an uncomfortable conversation, but if they then also understand their role would be to say, “I’m so sorry, I cannot provide you with more information, but…” And then activate the college duties. “I’m happy to give you information from somebody who can do that.” That should not make the relationship sour or make the patient fear poor healthcare outcomes down the road, right? In an ideal world, it doesn’t always happen, but it should actually be a very simple conversation. I need more information please, and then take into conservation that it’s not problem 55 and 10 minutes and that there’s ample time, right? But it is a very difficult terrain for patients to negotiate. So I think in that respect, physicians have to go that extra mile to say, what do you need with your illness and your illness experience?

And there’s a lot of training to help physicians and nurse practitioners with having that kind of approach because on the physician, a nurse practitioner’s side is the risk of what if I mentioned MAiD and I greatly offend this person. So we come back to that serious illness conversation piece, where it is tell me your values and expectations of your healthcare and what do you understand about your situation now. And now and again, patients are not as aware as they are of their mortality. So now and again, I have to sit with a patient and say, “Tell me what you understand about your health at this point in time, because I am concerned about your longevity.” And we will for instance, say to a patient and we call it a surprise question, if I left town for a year and I came back and I learned that you died, will I be surprised or not?

And if that answer is, oh, I will not be surprised, then we should be having these conversations about what is your expectations for the last year of your life? What kind of care would you like me to give you? How aggressive would you like to be? And we should have these conversations with patients irrespective of MAiD because it has to do with, if they do develop a pneumonia, that’s severe, would they want ICU? Would they want to be ventilated? Would they want CPR? It’s not just the MAiD question. MAiD is part of that spectrum of what do you want at end of life and once again, it goes back to the patient’s values. What would they want for their last few months or their last year? Physicians have to be open, but people have to also ask. And now and again, we have to cross the divide to find each other because there could be hesitancy on both sides.

Thank you. And for our audience, we have a couple questions left and then we’ll have time for a few audience questions. So if you have anything that you’ve been wondering, feel free to pop it in the Q&A box and we’ll try to get to as many as we can shortly. So Caroline, I’m going to turn it over to you. Just to switch gears a little bit, do you have advice for folks who are struggling to talk about their end of life wishes with their family or their friends? So not their healthcare providers, but people in their lives, any insight there?

Yeah. So most of us may find it difficult to talk about end of life wishes with our loved ones. There may be many influences on how these conversations might take place. For example, one’s values, beliefs, religion, health, culture, relationships, et cetera. And these need to be identified and factored in when the deciding to have these conversations. The earlier these conversations are had, the better. And they should include, as I said, the values, beliefs and one’s perception of quality of life as I said earlier. And this would make it easier for family members and loved ones to accept one’s end of life choices, and to improve their grieving process. It’s never too early to begin having these conversations. For those who are experiencing chronic illnesses or new diagnosis, learn about the progression of the disease and the treatments that are available to you, including palliative care, planned healthcare in advance. Advanced care planning allows patients to make decisions based on their values and wishes and record them.

And this would include choosing the type and length of treatments patients are willing to receive. Dying with Dignity and other organizations offers assistance to those who wish to create advanced care plans. And these advanced care plans can guide the conversations with the family members. Also, if loved ones do not agree with the patient’s decisions, or if they have varying values and beliefs amongst the loved ones and an agreement cannot be reached, it is important to appoint a power of attorney for personal care as a substitute decision maker or an agent as they call it in some provinces who understands and will honor the patient’s wishes. This will require the patients to be familiar with the substitute decision making hierarchy of the provinces that they now reside in and to know who the default substitute decision makers at a given time.

This is all important because if patients lose capacity prior to their death, having had these conversations and sharing advanced care plans with these substitute decision makers will really save the loved ones and family members a great deal of stress, and it will give them some comfort knowing that they’re making choices, treatment choices based on what the patients previously stated wishes are. And it would help them come to terms with choices and even the patient’s death. So those are some of my insights.

Yeah. And advanced care planning, it’s important at any age regardless of what your health situation is, because really anything could happen. So absolutely something everyone should look into if they haven’t already. So another question related to family and friends and how that ties into people going through the MAiD process, Tanja, have you ever had situations where people have struggled to bring up MAiD with their family and how was that resolved? Were you able to provide some support during that process?

So I think that is something that was way more common back in 2016 when MAiD was just legalized. It was new. There was a bit of stigma attached calling it assisted suicide and so forth. And the public really didn’t know what the public thought about it. And so people were quite fearful of judgment by people they know in their outer social circle. So over the last five years, that has improved significantly in that there’s not this fear that people will be judged or thought badly of if they or a family member have MAiD. There are still many people who have moral objections to MAiD or doesn’t understand the process and is fearful. So we do also encounter families who there’s a nervousness from the patient to bring it up. So usually what we would do is we would start with a bit of a layered approach and say we have a MAiD conversation, you will probably qualify and we may or may not do their assessments and get that process done.

And they may even have what we call a MAiD ticket, but when they have to tell their families, we ask them to discern between who do they think will support them and who will just not get there no matter what. Those who will not get there no matter what are typically family members with very rigid religious or cultural beliefs and they may just choose not to tell them whatsoever that they will have MAiD and clearly they will not be there on the day of the procedure and they will afterwards just be told they died in their sleep or they just died naturally. And they would just never know the truth, which probably does the least harm all around. Some patients have hesitancy in telling family members. And we encourage those who are just too scared to go there to maybe write them a letter that they can receive afterwards, just as a fair will at least because sometimes those people don’t have the goodbye that they otherwise would’ve been afforded with MAiD.

And I recall specifically a case where a mother had MAiD and did not want to tell her children who lived out of town and at the procedure had a photo of her children clipped to her shirt. And that was heartbreaking. And we encouraged her to leave them a letter for afterwards. And we eventually had the family physician speak with the family afterwards to explain why they were not told, because I can imagine that that would be quite hurtful to some people. Others may just be glad they weren’t involved, but we tried to ameliorate those kind circumstances as best as we can. For the vast majority, I would say 99% of cases however, families are supportive and open. It does not mean it’s always easy for them. Typically, people feel that their family members not getting MAiD can be advised too early and they could live longer because they don’t always see the suffering because we are very aware of physical suffering, but people are not as open with their emotional suffering, their existential anxiety and some of this really deeper seated fears.

And they also don’t want to be a burden to their family so therefore they protect them. Especially if they’re parents, even if their children are 50 years old, they still inherently want to protect their children and not have them suffer with them. So if there’s a real discomfort with people telling their family members they are going to have MAiD or they’re even considering MAiD, we start to freely and gently saying, have a conversation with your family about your experience of your illness, tell them about your illness and how it is affecting you. Surely they can see that for themselves, but they may not know all the details because you may be hiding from them anxiety or incontinence or pain and put the best foot forward. So maybe share with family what is really happening for you and then talk about your values in living and your values for end of life.

That may lead the conversation then to once they accept that part, you say, okay, I have now, you can tell the next, considered MAiD as an option for myself or a future. So you break the news a little bit at a time, so the family have understood the illness, have understood the values, now they know that MAiD could be something that their loved one is getting information on. Then the next step you just say, I’ve seen a physician or nurse practitioner to gain more information about MAiD and this is what I’ve learned maybe. And that gives them the assurance that it’s voluntary, they can change their mind anytime, which is really important to a lot of people and that there’s nothing forced. It’s a gentle date, just falling asleep.

So the more information you can give little bit by little bit, families can digest that in those little bites and then ultimately the patient can tell them I have a MAiD ticket and then I may use it any time in the future, there’s no pressure on me. And in MAiD in any case, it’s a little bit like an advanced directive too. It’s not just that you will have MAiD, the question is at which point in your illness or dying process are you going to have MAiD, what would be the reason to say I’m going to have MAiD this week or in a month from now? So what were those things that people were willing to suffer with and which things made them go, “I’m sorry, I’m done.”

So then that discussion is going to can happen so the family will know what is the criteria for that person to actually have MAiD or not. And then they can say, “Okay, I’ve decided it’s time for MAiD. This is what I would like to do.” If those family members are still on the fence, they can say… And I invite patients to say, you can tell them you would like to have them there if they find it possible, but it’s up to them to decide can they be there for you or would they prefer to say goodbye to you on a different time or date.

And we then are very sure to screen those families for who will struggle at the time of MAiD, who will need counseling support beforehand, who will need bereavement support afterwards, who do we have as a medical team have to keep an eye on at the time of the procedure and who do we know has gone through the whole process and is actually okay and fully supportive and fully present. And I think that way, we not just have a patient that is really well supported, but we also have family members who go through their journey that will not be traumatized, will not be angry, will not be upset that they had to go through something they just really didn’t want to be part of. And having said that, 99.9% of those family and members will be there even if it’s hard for them, because ultimately their value would be supporting their loved one and respecting their choice. So it’s very rare that we deal with negative parts of that process. For the majority, if people focus on what is important for their loved one, it will get them there.

Thank you so much for that. So we’re going to switch to a few of the audience questions before we wrap it up for this afternoon. I did want to share a lovely comment that came through from someone today. This is a most phenomenally brilliant and helpful session. Thank you so much for your professionalism, your compassion, your facilitation, and your ethics. And I echo that. Thank you both for everything this afternoon and for sharing so much with all of us. So a few questions that came in and just because we were just talking about the family member and friend topic, someone’s asking, do family members have a way of stopping this if this is my wish to have MAiD. And I’ll just, if one of you wants to jump in and then the other adds to it, we can just tackle the question that way.

So I would say legally, there’s a very clear answer on that. So in Nova Scotia, we had a case from a patient who had COPD, where the wife got a court injunction to stop MAiD. And ultimately the court ruled that this a decision between a patient and their caregiver, their physician or nurse practitioner, a family member has no legal right in saying you can have MAiD or not. It’s a rare occurrence. We have seen cases. I’ve certainly seen cases where the spouses would not separate. It probably was in most cases a non-amicable relationship to start with, but family members do not have a say. As much as family members legally cannot give consent for the person to have MAiD in case of lost capacity, they also can’t stop or prevent MAiD.

Just to add to that, with the changes in the law, with the waiver of a final consent, it will become more challenging for healthcare providers to provide MAiD following a patient’s loss of capacity if family members are objecting at the time of provision. And so in that instance, it might be important to find that power of attorney for personal care whose values might align with yours who will speak on your behalf and might support your decision or the patient’s decision to go forward with MAiD using that written agreement following loss of capacity. Just a little piece there with that.

That’s absolutely correct, Caroline. And we actually tell patients that if you have a signed waiver of consent and you lose capacity, unless your family tells us or your medical team tells us, we’re not going to know and by the time we hear you probably have died naturally. So that is the complex part with the waiver now that families may play a much bigger role than they were able to do before when the people could still advocate for themselves.

Thank you. And for our audience, we do have some recorded sessions on our website that go over what the medical assistants in dying law looks like and some of the changes that came into effect last year in March. But just for today’s purposes and because there have been some questions coming through about capacity and consent and informed consent, could one of you share a little bit more about what did change in March with reasonably foreseeable natural death and the ability to have a waiver of final consent and what that looks like and what that means?

Caroline, I’m sure this is not quite in your field. So the changes that came in March 18th was that the waiting period was removed for the 10 day period for people with a naturally foreseeable natural death. There only has to be one witness signing the request form instead of two. And the major changes were that the law was struck down to allow for people to access MAiD who do have a reasonably foreseeable natural death, which opens up MAiD to people who are younger suffering from horrible chronic illness and they do not have to have a lethal illness. That was the biggest change.

And then there was an introduction of the waiver of final consent, which in layman’s terms we refer to as Audrey’s Amendment, which means that if a patient has been approved for MAiD by the two practitioners, has a MAiD ticket, but then lost mental capacity to give consent at the time to probably have MAiD that the document we then sign in addition to the other MAiD documents can at that point speak on their behalf and still allow for MAiD to happen because before that patient often had to have MAiD a bit earlier because they were afraid of losing capacity. And back in the days of BLC 14, if you lost capacity, you no longer were eligible for MAiD. So that was a change that gave patients a lot of relief of anxiety and not having to have MAiD earlier.

Tanja, my PhD thesis is on the waiver of final consent, so I know that a little bit, not the first-

That’s great.

Perfect. Thank you. So another question here is, and we’ve talked about effective referrals, talked about the different responsibilities that providers have. So just for further clarity, somebody’s wondering if a healthcare provider refuses to… Sorry, can a healthcare provider refuse to comply with the patients wishes for MAiD on the basis of that doctor’s or nurse practitioner’s ethical, personal religious beliefs. Anyone want to chime in on that one?

Caroline?

I guess… Yes. So they can refuse to provide MAiD or assess for MAiD if they have a conscientious objection, but they’re required to make a referral. In Ontario, that would be an effective referral. So they are required to make a referral to someone who might be willing to assess and provide MAiD to those patients, but they can consciously object to assess and provide themselves, yes.

And this is, we’ve seen similar situations with other healthcare options in the past as well like abortion is another one that is often cited as the same thing. People don’t have to provide it if they don’t want to, but there should be that effective referral piece in place. Okay, great. So moving on then, if I know somebody in my life, a family member or a friend who is currently going through changes in their health and they’re clearly suffering and maybe talking about end of life topics, is there a way for me as an individual to bring up MAiD to my friend or family member, any ideas or insight into that?

There’s nothing in the law written about the late people providing MAiD information. I think the law was written to decriminalize healthcare professionals do it. So the distinction would still be the same that the public cannot incite suicide, but they can’t talk about medical options, right? So the law doesn’t specify anything, but that would be the logic flowing from it. And I think families talk about this way more often than we measure when it’s a bit, right?

Thank you. Caroline, anything to add?

No, it’s just the counseling piece again. I think that would apply the counseling recent piece, but other than that, I don’t have anything else to add.

And I think, Kelsey, it’s worth that even if a family member tries to say to somebody, you can have MAiD, it’s an option, often those people just didn’t know, especially if they’re elderly, then younger family members. And those persons usually struggle to bring it up to their family members because they don’t want to look like they want them to die or that they can inherit something. But they see their loved one suffer and they can see they just don’t know because they may not be watching the news.

So I know from experience that sometimes it’s really hard for families to bring it up too, but when they see the suffering become greater, they will say, “Hey grandma, did you know that that was legally available?” Now, even if there was pressure that nobody knew about, they still had to go through two MAiD assessments with two seasoned MAiD assessors, and we will not approve somebody that we have a vague sense was cohered or forced or pressured, right? And we specifically look for that as a vulnerability during MAiD assessments. So even if there was something, they shouldn’t get past our sniff test and our severe defense specific assessments.

Yeah. And you bring up a good point about some people maybe aren’t following the news and don’t know. And I think over the last several years, more and more people are aware that MAiD is something that is happening in Canada and is permitted, but there’s still so many misunderstandings about who is eligible. And I think especially under the old law, C14, people saw reasonably foreseeable natural death and assumed, oh, that must mean terminal, that must mean three months, that must mean see six months. And that was never the case, but there were so much confusion just about what all these terms meant and how it might actually apply to one’s own health situation.

So we probably have time for one more question here. So I’m just taking a look here at our list. So somebody has a question just about what to expect. So we’ve talked about having the conversations with one’s healthcare provider and hopefully information is available and everyone’s feeling comfortable with having those discussions, but when it comes to an actual assessment, so a step further, you’re actually deciding that you want to inquire about your own eligibility. Tanja, what does an assessment look like? How long does it take? What can people expect there?

So assistance will take place on a matter of a sense of urgency. So some will happen quickly within a day or two, some will be a month down the road. Depending on the needs of the patient when we first make contact with them off the receiving a referral, it is based basically a sit down long conversation. There’s no exam. It’s not a test. There’s no right and wrong answers. It’s a conversation heart to heart, very heart heating, very open, very frank. We are not scared to talk about death. We want to already find out what that person is scared of and what they need. And we are very careful to also make sure they understand their diagnosis, understand their prognosis, and have a very good grasp and access to all the other alternate treatments, whether that still be active treatment or just palliative or end of life treatment.

And we make sure that we look for barriers and vulnerabilities and pressure and all sorts of things. So we assess capacity at the time too. Do they understand the treatment options? Do they understand the implications of the options and do they stand the difference between the different choices? And we make sure that they then satisfy all the eligibility criteria from having a serious and incurable illness to understand their suffering. We do not measure suffering, but we have to understand their suffering, whether that be physical, mental, spiritual, psychological, social, whichever form of suffering it may take, we have to assess that they are in what’s called an advanced set of declining capability, and then comes there is date foreseeable or not to determine which of the two tracks of MAiD they go on, which have different follow up periods and assessments. But in assessment, we take at least an hour, sometimes hour and a half and in complicated cases, it may be spread over different days.

And in fact to where people don’t have a reasonably foreseeable natural date, we have a three month period over which to do our assessments, consult with specialists if needed, apply different therapies to make sure they’ve had a reasonable prior therapy in track two, not on track one. And then ultimately once they’re issued with the MAiD eligibility ticket, then they may go days, weeks, months, or even now a year or so before they actually will have MAiD. So it’s not as scary assessment, it’s a friendly talk with great empathy focused on the patient, but there are certain points we want to check and they have to get through all those things. But it’s not intimidating. It’s not scary.

It can be emotionally very difficult conversations for people who are still stuck in a phase where they haven’t made peace with death coming, who have significant fears and by the end of the conversation, there is a visible relief of anxiety. And people tell us that they can now live more freely and live without all the fears of what will go wrong because we have their backs. So an assessment is really a beautiful procedure to go through for most people. And for families, it is very informative and that they understand the landscape, not just of their loved one’s struggles that previously they may not have averted to or said anything to and alluded to, but they also understand what MAiD would look like and that it’s not so scary. So even for families, there’s a visible relief of anxiety and fear afterwards.

Thanks so much. All right. Well, we’re almost at quarter after and we’ll wrap up for this afternoon. But again, I want to thank you both so much for joining us this afternoon. Thank you to our audience for being here and for all your fantastic questions that came through. As mentioned earlier, if you do have a question that’s outstanding or a question that’s more personal in nature and you want some help navigating, you’re welcome to email us at support@dyingwithdignity.ca and we’ll follow up with you directly. We do have a survey that’s going to pop up after we wrap this up. So do let us know what you thought of today’s session, and we’ll be back on Thursday with Jocelyn Downie. So if you haven’t registered, please do and we will see you then. Thanks again, everyone and have a great afternoon. Take care.