Introduction to Advance Care Planning

On January 27, 2021, Dying With Dignity Canada (DWDC) sat down with Susan Desjardins, Board Member, and one of the founding members of the DWDC Ottawa Chapter, for a one-hour webinar on Advance Care Planning. This blog post summarizes some of the key takeaways from that presentation.

Key Takeaway #1: Advance Care Planning is at the heart of being an empowered patient or caregiver.

At all ages and stages of life, it is important for adults to consider Advance Care Planning. By clearly identifying your wishes before you become unable to communicate for yourself, you are reducing the burden of decision-making on others, and ensuring peace of mind for yourself.

[00:02:51] What is Advance Care Planning and why is it important?

Key Takeaway #2: Talking to others, sharing concerns and considerations about potential health care situations, can help in your Advance Care Planning process.

Whether you meet someone at a Dying With Dignity Canada workshop, or you have a friend or neighbour who shares your interest in Advance Care Planning, partnering up can provide mutual accountability and motivation.

[00:12:05] How to create an Advance Care Plan

Key Takeaway #3: Your wishes — as expressed by your Substitute Decision-Maker — generally have to be respected. But this may not always be the case.

Circumstances may arise that you didn’t plan for. Consider what would happen in an emergency situation if your Substitute Decision-Maker was not available, and your Advance Directive could not be found. We recommend having conversations early and often with your loved ones and health care team, and attaching a note to your fridge or in your wallet with directions on where to find your Advance Directive.

[00:22:12] Who should have an Advance Directive?

Key Takeaway #4: If you have more than one Substitute Decision-Maker, consider appointing them independently.

Appointing two Substitute Decision-Makers (SDM) to act jointly means that they will both have to be contacted and in agreement before a decision can be made. This can lead to disagreements and delays in your care. Instead, appointing your Substitute Decision-Makers to act independently means that your primary SDM will be contacted first, and if they cannot be reached, your secondary SDM will provide guidance.

[00:26:57] Substitute Decision-Makers

These are just a few of the insights gathered from our January webinar, “Introduction to Advance Care Planning.”

Joining us, we have Susan Desjardins. Susan is a board member of Dying With Dignity Canada and was one of the founding members of the Ottawa Chapter, which was established six years ago. Having experienced both the unnecessary suffering of a loved one at the end of life and a peaceful death of a loved one, who chose an assisted death, she is a strong advocate for choice through life and at death. Susan, thank you for joining us today, and I will now turn it over to you to get started on today’s presentation.

Hi. Yeah. Welcome, everyone. As Nicole said, we’re delighted that you were able to join us today. And I did notice there was a pop-up question about whether the webinar is going to be an hour. So we expect the presentation to go a little less than an hour and we would start questions then, but we’re also going to try and pepper in a few questions that were quite common that came in ahead of time as well. So we are, today, going to be talking about advance care planning and all the considerations that go into it and the kinds of conversations that we would encourage you to have. And we’re going to start with a polling question to test your knowledge.

All right, folks, so on your screen … I’m just going to launch this poll here, it’s going to pop up and we’ll just give you about a minute or so to answer your question there. And I will be asking the same question at the end of the session too, so, hopefully, everyone walks away with some additional knowledge this afternoon and we’re excited to see where everyone’s at in their advance care planning process.

While you’re taking the time to answer that question, I just wanted to flag another question that came through from someone attending today. So they’re asking about access to the slides afterwards, and just to reiterate what Nicole said, this will be posted on our website and it will be available, so you can see the slides online and refer back to it as needed. And, also, you’re welcome to share the link to the presentation with any friends or family members who might want to watch this session later on.

So it looks like most of you have participated in the poll. I’m going to end the polling now and I’m going to share the results so everybody can see. So, 39 percent of you think that your knowledge of advance care planning is okay, 33 percent think it’s good, 23 percent don’t know much about it, and five percent feel that their knowledge of advance care planning is excellent. So we appreciate you sharing that with us and, as mentioned, we’ll have a couple more polls for you throughout the session.

So let’s talk a bit about what advance care planning is and why it’s so important. It’s really a process that is at the heart of you being an empowered patient or caregiver and it’s important for all adults, regardless of whether you’re a senior or you have kids or you’re just a young adult, because what this is all about is being clear about your own wishes, should you find yourself in a healthcare situation where you can’t speak for yourself. So, think of advance care planning as an umbrella of documents that allows you to plan for a serious injury or illness. Why is it important to consider all of these options? And they include estate planning, financial preparation, a real consideration of your own values and beliefs, ongoing discussions with a variety of people in your life, and health documents. It’s important because it means peace of mind for you and it also reduces the burden that your spokesperson or substitute decision-maker, your family or your friends may face, when what they really want to be doing is focusing on you.

Next slide. So our focus at Dying With Dignity is on your health, your life, your choice, so we’re going to be focused today on the health aspects and healthcare as it relates to advance care planning. We’re going to talk about values and beliefs, the discussions that you would want to have related to your advance care plan, and documentation that supports it.

Next slide. So there’s some terminology that can be a bit confusing or maybe you’re not that familiar with it and we’re going to talk a bit about it with this slide. So, substitute decision-maker is a term that you’ll hear and it’s commonly used to describe the person that you appoint to make decisions on your behalf if you lose the capacity to consent or to make informed decisions about your own personal care or finances. An advance directive is a document that can support your substitute decision-maker. It’s prepared by you when you’re well and able to make decisions for your own healthcare and finances, in which you state what your wishes are for medical or nonmedical care. Advance consent is when a competent person makes a request for assisted dying that could be honored later, after they lose the capacity to make medical decisions for themselves.

So I’m just going to go into that last bit a little bit further, because some of you may have been hearing in the news about Bill C-7, which is before parliament at present. There is a provision in Bill C-7 that allows for, what is called, advance consent and that is designed for circumstances where an individual who has been assessed and approved for assisted dying and has set a date for their assisted death, it may be at risk of loss of capacity before the date on which they might receive assisted dying. So, this legislation would allow that individual to make an agreement with their healthcare provider that they wish to proceed with the assisted death, even if they lose capacity before their scheduled date. So that, as is indicated on the slide, is not currently available.

There is another advance, I’m going to call it, which is called an advance request. So an advance request is about an individual being able to make a request for an assisted death while they still retain competence, but for a time in the future, an undefined time in the future, where they may be in circumstances where they have lost the capacity to make an informed healthcare decision. That is not something that’s currently being considered with Bill C-7, but it is something that the Canadian Parliament committed to considering it and reviewing at some time, hopefully, when we come out of this pandemic. So, it would be subject to a discussion during a parliamentary review. So I just wanted to clarify that for any of you who might be getting confused with all these different terms.

Next slide, please. Okay, so what is the difference between advance care planning and wills? Well, you will prepare a will and perhaps other documentation and that will, essentially, be used after you’ve died. Advance care planning is something for while you are still alive and capable of making, at the time you prepare the plan, an informed decision and, potentially, in a situation later on where you are no longer able to have the capacity to consent. So, Kelsey, I think we had a question from a number of people on this topic. Do you want to go ahead and address that?

Yeah. So the question that came through is, if I’ve made a power of attorney for both health and finances with my will, how does this tie in with advance care directives or other advance care planning?

Okay, so I’m taking it that you wanted me to respond to that question?

Yeah, that’d be great.

Okay. Sorry. Since I didn’t write it down, would you mind repeating the question?

Yeah.

Thank you.

No problem. So this person has made out a power of attorney for their health and for finances with their wills, so that may have been done with a lawyer, maybe not, but how does this tie in with advance care directives?

Okay. Thank you very much, Kelsey. So your substitute decision-maker is the person who you would make sure they understand your wishes very well and they would speak for you when you are no longer able to speak for yourself. So, the advance care directive, which we’ll talk about a little bit later, basically makes clear what your wishes are for medical care that you would want to have or not want to have and it’s something that you would discuss with your substitute decision-maker and it’s, essentially, part of your longer term healthcare planning. So your substitute decision-maker, if I can put it this way, would be intimately involved in conversations about your advance care directive so that they truly understand what it is that you wish for, should some circumstances arise where you cannot speak for yourself, related to healthcare matters. And we can follow up with that if, for some reason, that wasn’t a sufficient response.

So we can move onto the next slide. Okay, so how do you create an advance care plan? So the Dying With Dignity advance care planning kit provides a pretty clear documented process, but the main components are a serious consideration for your own values and beliefs and preferences for future healthcare, depending on the circumstances, designating your substitute decision-maker, if you haven’t already done so, documenting your values, beliefs and preferences, and ensuring that you have officially designated a substitute decision-maker. And then reviewing these documents on a regular basis to ensure that they still accurately reflect your circumstances and your health situation.

I think we can go onto the next chart. So these are some of the steps in the advance care planning process. As I said, you want to consider your values and beliefs and preferences for future healthcare. And I can say, from experience in doing advance care planning workshops with our Ottawa Chapter, that we have found, doing the workshops, that people really enjoy and appreciate being able to talk to others in the workshops and share some of their concerns and the considerations they might have with respect to circumstances they could encounter from a healthcare perspective, and their values and beliefs. You want to make sure that you make a decision as to who your substitute decision-maker would be, and that is a really important decision because you want someone who knows you well, who respects your values and beliefs, and whom you can trust to carry out your wishes. And it needs to be someone who will support your wishes, who will be your voice when you can’t speak for yourself and who will advocate on your behalf. You want to ensure, in your plan, that you consider what you want your end of life to be like.

You also need to make sure, as you do your advance directive, that you document all of this information and, with respect to other documents, that, for instance, you might want to prearrange your funeral, which I have done, to unburden your substitute decision-maker or family members. For instance, if you are moving into a senior’s residence, depending on your circumstances, when they review a healthcare plan with you, you may want to, for instance, have a do not resuscitate order on your file or you may want to have a no CPR order on your file. One of my elderly relatives did this when she moved into a senior’s health facility. She was in quite good health, but she was very clear that if she had some kind of a life-threatening condition and she could not speak for herself, that she did not want to have any resuscitation practice on her. You maybe wish to be an organ donor, and this is another document that you may want to complete. And we mentioned earlier, wills and so on that you would review with your attorney.

I think we’ve covered that, so we can move onto the next area. And we have a polling question.

Yes. So this polling question is about to pop up on your screen. We’re curious, how many of you have completed or filled out your advance care planning documents before? And there’s lots of great questions coming through, we see you typing them and that’s fantastic. One that maybe, Susan, you can address just while we’re waiting for everyone to answer here is can you speak to the difference between substitute decision-maker and power of attorney?

In some ways, they’re similar terms. A power of attorney can be someone responsible for your financial affairs as well as someone responsible for your healthcare. So you might have the same person who is the power of attorney for your healthcare and your financial care, or you might have different people for whatever reasons. The substitute decision-maker, as we use the term, is someone who will speak on your behalf with respect to your healthcare needs when you are not able to do that.

Great. That’s helpful. And most of you have completed the poll, so I’m just going to end it and have it pop up on the screen for you. So most of you haven’t completed any advance care planning documents before, 58 percent answered no, and 42 percent answered yes. So, hopefully, we can walk away today with some additional information and get started on our documents.

Okay. And let me just urge you, those of you who have not perhaps done some of these actions, to really get on it after we’ve gotten through this seminar. As an example, I had established an advance care directive when I was living in Ontario and I also did the same once I moved to BC because it is a little bit different in BC than it is in Ontario. It really is important to have our wishes respected when we find ourselves unable to speak for ourselves, so I do urge you to get on with the process later on.

Okay, we can move to the next slide. Okay, so the who, the what, and so on, with respect to advance care planning. So who should have an advance care directive? Well, every adult should have one so that they ensure that their wishes can be respected if they cannot speak for themselves. And that’s the why of doing this and, as I said earlier, easing the burden on the people who may have to make a decision for you, so that they are clear about what your expectations are. So with respect to the advance care directive, there are two key things that you want to do. You want to appoint your substitute decision-maker, because if you don’t appoint one, in most provinces, there already is someone designated, through a hierarchy, as your decision-maker and that person would automatically be the person speaking for you if you haven’t appointed someone. And then create your advance directive, which is a document within the advance care planning kit that you can find on Dying With Dignity’s website.

And, as I said, I urge you to do it now, sooner than later, so that, first of all, you’ve got someone you feel confident in, who will speak for you, and you have unburdened your family or your friends from sort of having to wonder what you would’ve wanted. And there’s not a requirement for you to see a lawyer with respect to your advance directive, you simply have to have it witnessed, so it’s pretty easy to do. Other things, such as your will, you might have to consult with a lawyer, but it can be well worth it.

Okay, we’ll move onto the next slide. Okay. So once you understand, hopefully, partly as a result of this discussion today, the components of your advance care plan, you can prioritize which one you feel is most important or urgent to you at this time. Accidents are what they are, they’re unexpected and they can lead us to circumstances where we are not able to speak for ourselves, and so it’s really important to have a designed substitute decision-maker and a directive that can guide them.

Sometimes, it’s a bit hard to get motivated to do this work and I certainly would encourage you to consider partnering up with someone, whether you’re in a Dying With Dignity workshop, there might be someone there that you feel you can share information with, or you might have a friend or neighbor or a relative that also doesn’t have an advance care directive and you could perhaps work with them on it and go at it a bit at a time. Maybe schedule a Zoom coffee date or a wine glass date to talk about your values and beliefs with your buddy and try and get that sort of clarified for yourself, and then move onto the next step in terms of what your wishes are with respect to medical care. And reward yourself. As I said, perhaps a cup of tea, a cup of coffee or, in my case, perhaps a glass of wine for having completed my revised advance care directive when I moved to British Colombia. Just think about the value of this and the benefit it brings to those around you, so that they aren’t trying to guess what you would’ve wanted.

Okay, let’s move onto the next slide. So we talked a bit about this, but the substitute decision-maker or, as we said, power of attorney for care, in terms of finances, it’s important to have someone who can handle things if you own property or investments or just your regular daily living requirements if you’re not able, again, to speak for yourself. In the area of healthcare, the substitute decision-maker can confidently make decisions on your behalf based on the discussions they’ve had with you and what you’ve documented. It varies a little from province to province, but, generally speaking, your wishes do have to be respected as they are spoken by the substitute decision-maker in the healthcare system. So, again, it provides a little bit of guidance and ammunition, if you will, for your substitute decision-maker if they are trying to convince a healthcare professional in one way or another how you should be treated.

Recognize that, of course, you’re not going to think of everything that could possibly happen to you, but by being clear about your values and beliefs, and by having these conversations with your family, with your substitute decision-maker, with your healthcare provider, you can have a better confidence that they will be able to interpret what it would’ve been you would’ve wished for, if it’s not clear from the advance directive or because the circumstances are different. Also, recognize that there are situations in which your wishes may not be respected, and this is provided for in legislation in the provinces where there’s an emergency situation and treatment has to be undertaken, perhaps, to save a life and healthcare providers will be required to do that. So, as an example, if you were at home and you had a massive heart attack and you had said you did not want to be resuscitated in your advance care directive, the emergency crew that comes to help you, they don’t necessarily know that and they are required to attempt to resuscitate you. So, there are situations where, even with all the preparation and work you’ve done, your wishes may not be respected.

Okay, we’ll move onto the next slide. Okay. And this is just, basically, to make it clear to you that every province has its own sort of guidelines and calls certain documents certain things. So you can see here that, for instance, in Alberta, the advance directive is called the personal directive. In Ontario, it’s called an advance care directive. And in the Yukon, for instance, it’s just a directive. Okay. And onto the next.

So who would you want to appoint to be your substitute decision-maker? And I think we’ve talked about this a little bit, but the person has to be of legal age, they need to be an adult. They have to, themselves, have the mental capacity to be a spokesperson for you and they also need to be readily available. So it doesn’t mean they have to be in the city where you are or the town, but that’s probably a good thing. If not, they need to be able to communicate with the healthcare team from wherever they are. And they must not be prohibited from taking on this role via law. And then, of course, you have to trust them, that they understand what your wishes are and that they will respect them. So I think, Nicole, we had a question that had come up earlier, before the presentation, on this.

Yeah. A common question about who to choose as a substitute decision-maker, but, specifically, whether or not you have to live in the same province. A lot of folks reached out saying that they have children who live on the east coast or the west coast, opposite ends of them, and do their substitute decision-maker … Must they be in the same province or territory as them?

So the short answer is no, they do not. Although, it’s helpful if it’s someone nearby. You might even consider, for instance, if you have a child outside of the province … And we’ll get into having two substitute decision-makers. But perhaps you designate the child as the primary, but if you have, let’s say, a good friend living in the same community as you, who might be able to act as a substitute decision-maker, perhaps you designate them as a secondary, in the event that you can’t reach the first individual.

Okay, we’ll move onto the next slide, which, I think, just gives you an idea of the age of majority, which varies by province. And we’ll move onto the next slide.

So can you appoint two substitute decision-makers? So in most provinces and territories, you can appoint two substitute decision-makers and you determine whether they act jointly or independently. And you can find out a bit more about these roles if you look on the website. But very briefly, we strongly recommend, if you want more than one substitute decision-maker, that you designate them independently, to act independently, because if they are designated as joint substitute decision-makers, then they both have to agree, they both have to be reached in order for a decision to be made about your care. And the other issue is it can lead to some disagreements. If one of those individuals [inaudible] appointed. So, recommend to act independently and that also can be helpful, as I mentioned earlier. If the healthcare team, let’s say, is trying to reach the first person and they can’t, then they could try and reach the second person and perhaps, at that point, that person would be more easily accessible and they could then proceed to provide guidance to the healthcare team.

Okay, onto the next slide. So I mentioned earlier, if you don’t appoint a substitute decision-maker, there is generally, in each province, a hierarchy of individuals who would be called upon in order of the hierarchy to act as your substitute decision-maker. So, generally, the hierarchy starts with a spouse or parent, or it could be a child or parent, the next daughter, a parent with the right of access, onto brother or sister, another relative or close friend and eventually, you get down to The Office of the Guardian and the Trustee. And I don’t think any of us wants The Office of the Guardian and the Trustee to be making decisions for us. So, even in Nunavut, there is no hierarchy such as this and you cannot appoint a substitute decision-maker prior to actually needing one, but healthcare providers will look to someone who they feel understands what your wishes are and can provide insight into what you might wish.

Okay, we’ll move onto the next slide. Okay. So it’s always a challenge to initiate a discussion about you, yourself, being in a healthcare situation where you can’t speak for yourself. And I have to say, we had one advance care planning workshop in Ottawa, where one of the individuals participating said they had actually decided to spring it on their family after the Christmas dinner. So I don’t know if that’s something you would want to do, but these are some suggestive ways in which you could initiate the topic. Perhaps, you want to engage the person by saying look, I read this interesting book by, for instance, Atul Gawande, and I really would like to discuss it with you. Or perhaps you and the person that you want as your substitute decision-maker or your family members have been with a loved one who died recently and you want to talk to them about something that they don’t want to talk about, which is what about if I’m really sick or I’m dying? So, these are all some suggestions about how you could perhaps approach this.

We could go to the next slide. Okay. And there’s a tip here for you, that you can create an in case of emergency contact on your cell phone and that could lead emergency care providers immediately to your designated spokesperson or substitute decision-maker. And I will say that, being a technology dinosaur, I actually did go through this process on my iPhone and there’s an app on your iPhone called Health, and within that Health app, you can actually create this … Provide a bit of information about yourself for emergency responders and identify your emergency contact. And, as I understand it, they can access this particular information, even if your screen is locked. So don’t take my word for it, try it out. But I think it’s fairly straight-forward for anyone who might want to do that.

Okay, we’ll move onto the next slide. So an advance directive, when is it used? Who uses it? And do I need to have one? If you’re not convinced you need to have one yet, we’ll keep working on it, but I really do urge you to have it. In a medical emergency or any circumstance that leaves you unable to make your own healthcare decisions, your advance directive, as a tool for your substitute decision-maker, will ensure that, to the best of their ability, the healthcare team will be able to respect your wishes. It helps those who are responsible for speaking for you to try and choose the right care and treatment and it basically, as I said earlier, reduces the burden that’s placed on them in trying to figure out what might be the best approach you can take. Only you can create an advance care directive, no-one else can create it for you. It’s a reflection of what your wishes are, so it’s your responsibility.

Okay, we’ll move onto the next slide. And, again, here we are with some of the variations in terminology from one province to another. But in the end, you only need to be concerned about your province and Dying With Dignity has specific information on a province by province and territory basis on the website.

Okay, we’ll move onto the next. So, some of these slides are … They tie into the advance care planning kit that is on Dying With Dignity’s website. But, basically, this is about you’re making choices about things that are important to you, about your own values. So I’ll give you an example. And this actually happened with a relative of mine, who was quite elderly. You’re living in a nursing home or a senior’s residence and you just need a little bit of help, occasionally, to bathe and perhaps to eat. And then, all of a sudden, you suffer a catastrophic, life-threatening event, it could be a cardiac arrest, in the case of my relative, it was pneumonia and, all of a sudden, you’re thinking wow, this is pretty serious. What do I want to happen about this?

So, in the case of my relative, she was hospitalized with pneumonia and it was a near thing, but she did recover and she came back to her senior’s residence, but a week later, she was back in the hospital again. And at that point, she was diagnosed with congestive heart failure, which, in her view, was much more serious because it’s a chronic and sort of a devastating long-term condition. Whereas, in her mind, pneumonia was not such a big deal because she could recover from that. So, at the point at which she received the diagnosis of congestive heart failure, that was when she really seriously started thinking about making sure that there was a do not resuscitate order in place for her and what her wishes were for end of life and how she wanted her end of life to occur.

Kelsey, I think there’s another question on this topic, so if you wanted to go ahead with that.

Yeah. So a question that we got quite a bit is, when it comes to these documents, can a family member override anything that you’ve written down or discussed? And if you could speak to that, that would be great.

Well, I think we come back to what we discussed earlier, which is if you do not appoint a substitute decision-maker, then there is a hierarchy that is in place and whoever’s at the top of that hierarchy is the first person they’ll go to. So I would say the short answer is if you actively designate a substitute decision-maker, you choose someone who is able to respect and represent your wishes to the healthcare system and the healthcare practitioners must pay attention to the substitute decision-maker’s expression of your wishes. So, I think that’s the protection that having designated your own substitute decision-maker offers to you.

Okay, we’ll move onto the next slide. Okay. Again, these are tools that are used within the advance care planning kit to help you think through what your values are and what’s really important to you in terms of your life and how you live your life. For instance, for myself, I think quality of life is really important at this stage in my life and I feel very strongly that if I could not do the kinds of things I’m doing right now, like the volunteer work I do with Dying With Dignity, that would really influence what I wanted in terms of care, should I be faced with some kind of grievous and irremediable condition. Yeah. I think it just encourages you to reflect on what is and has been important to you in your life.

I think we can move onto the next. The other thing for you to consider as you’re doing your advance care directive is your own end of life wishes and what would you want the end of life to look like? Where would you want to be? What do you think you would be doing? Who would you want with you? Do you want the support of someone from a spiritual perspective? Are there certain projects that you’d want to undertake? I think of one individual who worked with us as a volunteer in Ottawa, who hosted a really special 90th birthday party because I think she felt her health was quite undermined and was concerned about end of life and she wanted to get all her friends and family and the people she valued together. And are there things that you would want to do by which you might be remembered? Do you want to record a message to people? Do you want to have a video talking about your life? Or whatever it might be.

So I think we might have another polling question coming up here.

I don’t think so, Susan. Sorry, I’m not seeing one.

Oh, okay.

I think we’ll just move onto keep talking about-

Okay.

Advance directive.

Yeah. No. Sorry, I had a mistaken note there. So you may have a wish, for instance, to die at home, which many Canadians do, or in a hospice or hospital, but it may or may not be possible. Sometimes, it’s difficult, for instance, to get into hospice or the particular condition that you have might make it difficult for you to be cared for at home. But, again, if your substitute decision-maker has a good sense of what your wishes are, they can try and accommodate them as best they can and, for instance, if you’re in the hospital, perhaps they can work with the healthcare team to make it feel more homelike for you. So I think, again, it’s all about having these conversations, so people who care for you and will speak for you can help make your wishes come true as much as possible.

Next slide. Okay. So can a request for assistance in dying be included in your advance care directive? So I think we have to separate can it be included versus can it be acted on? At present, you can’t really make an advance request for assisted dying. And I have. You could write in your advance directive what your wishes might be with respect to assisted dying, should you be in certain circumstances in the future. However, because it is not legal to have an advance request, basically, it can’t be acted upon, then your substitute decision-maker, at present, would not be able to have that acted on. It may be possible some time in the future, but, at present, it would not be possible. However, if it makes you feel better to include that, let’s say, at the end of your advance care directive, it would not invalidate the directive and it may, in some ways, just provide further guidance for your substitute decision-maker, should something occur that was not foreseen in the advance care directive itself. So, hopefully, that responds to that question.

Okay. Talking to healthcare providers. So it’s really important that you talk to not just your family but your healthcare physician, if you’re lucky enough to have a general practitioner, about what you want or don’t want at end of life at a time when it’s not an emergency. So people who have had these conversations with their healthcare provider, with their family members, generally, are less fearful, they’re less anxious, they feel like they are having a bit more control and influence over what happens to them. And, again, speaking from my personal experience, I had, in Ontario, provided my general practitioner with a copy of my advance care directive and she was very respectful of my wishes and included in my dossier and, in fact, actually asked if I could direct her to where she could get a copy of the Dying With Dignity advance care directive because she felt it was very straight-forward and clear. It only takes a few minutes, when you’re meeting with your general practitioner, to give them a signed copy of your advance care directive and then you might have an opportunity at a later appointment with them just to discuss it briefly with them.

Okay, we’ll move onto the next slide. So, again, here are some suggestions about having this conversation with your general practitioner, your healthcare provider. And it’s just another way of initiating this conversation, making sure that your wishes have some reasonable chance of being respected in the circumstances you described. And if you feel more comfortable, you might want to take your substitute decision-maker or friend with you.

All right. Now, I think, Nicole, in this case, we had a question. Am I correct?

Yeah. So we did have one here, but you know what, Susan? I think you’ve addressed it quite a bit. The question is when and can someone’s substitute decision-maker override their expressed wishes or can their healthcare provider override their wishes? Which I think you’ve touched on quite a bit, but maybe if you just want to give one final answer to that question.

Yes. Well, there’s probably not a final answer to that question, but I do actually, for those of you who are documentation hounds, like I am, encourage you to have a look at your Healthcare Consent Act for your province because it does provide some indication of when, for instance, in an emergency, a healthcare provider can basically take the action they feel is required to preserve the person’s life. Or if the circumstances that occur were not, let’s say, specifically addressed in the advance care directive, in that case, the substitute decision-maker will have to interpret with the healthcare team what your wishes may have been.

So we’ll move onto the next slide. Okay. So I think I actually mentioned this, which is make sure, when you get the advance care planning kit, that you get the particular form for your province and territory. For those of you who feel it would be beneficial, I encourage you to have a look at the Healthcare Consent Act for your province. Make sure that each copy of your personal directive is signed and dated, so you have to have an original signature on each copy and it needs to be witnessed by two persons. If you review your document periodically, you need to have that conversation with your substitute decision-maker if you’ve made any changes. And just make sure that it’s kept to where it can easily be found, so you might want to have a fridge magnet that just says this is my substitute decision-maker, here’s where you can find my advance care directive.

Okay, next slide. Okay, so here is an example from the Dying With Dignity kit of the advance care directive and these questions basically direct your substitute decision-maker and, through that person, a healthcare team in terms of what kind of care you wish or do not wish and what kind of interventions you wish or do not wish. And we can turn to the next page. And you complete those sections to reflect that. If you want your life to be prolonged and you want that all life-sustaining treatments be provided, then, of course, you would not complete those first three sections and you would indicate that in section four. And if you don’t want your life prolonged, and the instructions are provided in the kit, you would cross out number four that requires that your life be prolonged and life-sustaining treatments are provided.

Okay, we can go to the next slide. And this time, I think we do have a polling question.

Yes, we do. So we’re nearing the end of the formal presentation and the slides that we’re going through. Do stick around if you can, we have lots of questions and we’re happy to answer as many as we can. But before we do, we just wanted to see what everyone thinks their knowledge of advance care planning is now, after going through the presentation. So that’s up on your screen now and we’ll just give everybody a minute or so to answer that. And, also, I’m monitoring the questions. There’s many that we’d like to read out for Susan to answer, but we are getting some that aren’t specifically related to advance care planning, they’re related to other end of life topics that are certainly very important and we do want to make sure that you have the resources you need. If we don’t get to your question, you’re welcome to email us at info@dyingwithdignity.ca and Nicole or I can follow up with you directly and try to fill in any blanks related to other end of life topics.

So most of you have voted. I’m going to end the poll and share the results. So I think there’s been an improvement and more people are feeling good about the knowledge that they’ve collected today. So, 59 percent are feeling good, 25 percent, excellent, 14 percent, okay and still a few people who don’t know too much and want to know more, but there’s plenty more online and I think Nicole will speak to that in just a second.

Yeah, thank you. Thanks, Kelsey. So I’m just going to move onto our second last slide here and let you know that this concludes our formal presentation, so, Susan, thank you for walking us through advance care planning. We will be sending out a post-webinar survey, as I mentioned at the beginning, so if you can, stick around and it’ll pop up on your screen. We’re going to move into audience questions in a second. I just wanted to also remind you that our presentation today is being recorded, so it’ll be posted on our website, but we will also email out the link so that you can click on it and watch it later on, if you wish. We’ll also include, in that follow-up email, links to the advance care planning resources on our website for any of you who have not yet downloaded your copies of your kits. And I think we’ll include in that, as well, Susan, what you mentioned about the Healthcare Consent Act, we’ll look into getting those included in the email as well. So, with that being said, we’ll get to audience questions.

Okay. So the first question that we have here for Susan … So, Susan, can you just speak to whether a living will is the same as an advance care plan?

Yes. I would say, essentially, it is a similar thing. I would say it’s an advance care directive. Rather than the advance care plan, the advance care directive, which, essentially, outlines what is important to you. But I would also urge you to ensure you have a will, an actual will, as well as an advance care directive so that everything is taken care of.

Okay, great. So you spoke, Susan, to the hierarchy that’s naturally in place for those who don’t appoint a substitute decision-maker, but then, also, the option for people to choose who they want their substitute decision-maker to be. So a number of people have asked, can I appoint my adult child? Can I appoint my spouse? And the answer to that is yes, you can appoint whichever one of those you like. You don’t have to, you could appoint someone else if you think it’s appropriate. But do you have any tips or considerations when deciding do I choose my spouse, do I choose my adult son or my adult daughter? What are the questions that you might want to ask yourself when making that decision?

I’ll give an example that I came across in an advance care planning session, where a couple attended and they had two children, and one of their children was a doctor and one was not, and they were trying to make a decision about should they have the one or the other or both of them? And one of the things that was weighing on them was that their sense was their son would not support them if they made certain choices with respect to end of life, even though their son was the doctor, and they might’ve leaned towards having that person. But they were also concerned of putting the burden on their daughter, who they felt would actually respect their wishes, whatever they might be.

So, I think things like that can arise and the really important thing is that you have the conversations with the person that you feel you want to be your substitute decision-maker, that you have confidence and trust in that person, that they will respect your wishes and that you have helped them understand enough about what you value, what you believe, what’s important to you, that, in a circumstance where your directive may not be clear enough, that they will be able to interpret and speak for you, be your voice in an authentic way.

Okay, thank you. That’s helpful. And another question on a similar note, you spoke to the option of having two substitute decision-makers if you want to. Can you speak to any pros and cons when it comes to deciding between one or two people?

Well, I guess, the main con, I think, is having joint substitute decision-makers. It’s a bit more complicated if you’ve got more than one because you have to have the conversations with more than one person, so that may be a bit of a con if you have more than one. But I think the primary thing, as we’ve discussed, this has to be someone that you implicitly trust and that you have had enough conversations with that you feel confident they understand your wishes. If you are concerned that they may not be accessible, then designating a second person, who can act independently, is certainly a valid choice.

Great. Thank you. So we have a few questions that came through about do not resuscitate orders, and my understanding is that if you want a DNR, it is something that you need to get from a healthcare provider, a doctor, and I believe nurses are also allowed to issue them, but you’d have to check for each province. And this person is wondering if you do have a DNR, if it makes sense to have a medical alert bracelet that also says that you have that DNR?

So I will admit that I’m not up on all the legislation in all provinces, so I will speak only to Ontario. And at the time that I looked into this issue of do not resuscitate orders, we did have a conversation with the person responsible for a emergency response team in the Ottawa area and they will only respect, or they would at that time, they would only respect the actual DNR order. The order would have to be, literally, on your chest if they came in. The way the representative put it was, “In the time it takes me to open my kit to attempt to resuscitate you, that’s how long you have to provide me with the do not resuscitate order, the actual, original do not resuscitate order.”

So, do not resuscitate orders are particularly beneficial in circumstances where you’re in an institution of some kind, a hospital, a senior’s residence, a long-term care home or so on, because they would have them on file and so they could be respected. But if you’re still living in your own home and if you happen to be living alone, it’s really going to be very difficult for it to be respected. So, I think I’ll leave it at that, Kelsey.

Yeah. And I have heard similar to what you’ve said as well, Susan, that it has to be that actual paper and if you have a bracelet or … Some people have asked, can I just get it tattooed on me, saying DNR?

No.

You can do what you want, but the paramedics need to actually see that paper and that’s what they’re going off. So if you’re in your house, we often say and other organizations will say to put documents like that on your fridge because it is one of the places that paramedics will look if they have the time to look, but, again, if it’s I have this document, but it’s in the third draw down the hall, they might not go searching for it. So, I think fridge is the best bet in the home, but it gets more complicated as well, if you’re out at the grocery store, somewhere else.

I do encourage those of you who feel strongly about this to lobby your provincial politicians to allow for a DNR order to be included on a MedicAlert bracelet because that would actually make a lot of sense, but for now, unfortunately not.

Yeah. We are getting some questions coming through about some other topics, as mentioned. So we’ve had a few questions about COVID-19. I will let you know that we’ve done two webinars with clinicians, talking about what’s been going on with end of life care during COVID-19, and we did another webinar that was specifically about advance care planning during COVID-19. So, all three of those are recorded and they’re posted to our website, so if you go to the website, you’ll find them there. And if you have any trouble, just send us an email and we’re happy to point you in the right direction.

Also, some other questions are coming through about how do I access a blank advance care planning kit to get started with the process? Again, we’ll email those out to you, so you’ll have a link to the page on our website that has a general advance care planning kit that will be relevant to everyone. It will have a number of the charts that we showed on the screen today, that have the breakdown of what things are called in different provinces and territories. And, also, through that link, there’s going to be additional links to get to documents for your specific province or territory to fill out the actual documentation.

We talked about this a little bit, Susan. So what do I do with my documents once they’ve been completed? And if you could go over, again, all the people who should have your documents, and where is a good place to keep them?

Yeah. So I think the suggestion of having a little note on your fridge with a fridge magnet that says here is where you can find my advance care directive and here’s the contact information for my substitute decision-maker, or put it into the Health app on your phone, those are all good things to do. I think the main thing is you don’t want to put the documents in your safe deposit box, you want to keep them in your home, in a readily accessible place and ensure that your substitute decision-maker knows where they are.

Do we also make a copy and give it to our doctor or our healthcare provider?

Of course, yes. Yeah. I mentioned that earlier. Unfortunately, our healthcare system is not fully electronic yet and there’s no guarantee that, let’s say you’re taken to hospital, that the healthcare providers would be able to access your advance care directive on your GP’s electronic file. So, that’s why it’s really critical that they know how to access your substitute decision-maker.

Absolutely. Okay. Just going through the rest of the questions here. So this is a follow-up DNR question, “So if my spouse was facing some sort of medical emergency at home, could I, as the spouse, say to the paramedics, “Oh, she doesn’t want to be or he doesn’t want to be resuscitated,” and then give the paperwork later?” And I think no, they’ll need to see that actual document. So that’s where it gets really important, for those of you who do want a DNR, that that document is complete and is accessible. As we talked about, there are situations where it’s difficult to have it as accessible as it could be, but it has to be that form. It’s a form with a serial number on it that’s unique to you, that your healthcare provider fills out. And whatever your substitute decision-maker or family member says, it really needs to come down to that form, not their instructions. Susan, anything else on that?

Well, yes. And I think a do not resuscitate order is about a circumstance where someone has actually … They’ve died, they aren’t breathing. So if you are the spouse of that person, then I don’t know that you would call the emergency responders if the person has died. You might call the doctor, your GP or someone. But if the person had a DNR order and had made clear to you that they did not want to be resuscitated and they have died, I guess that’s a whole different circumstance than someone who’s, for instance, on their own and somehow manages to call 911 and the emergency responders arrive and they need to be resuscitated at that point.

Thanks, Susan. So another question … Or I think it’s just more of a clarity piece. So a few people have asked about individuals with dementia and if having these documents filled out, how it relates to if and when you do get a dementia diagnosis? So if I were to fill it out today, when would my wishes be upheld by my substitute decision-maker? When would it become a document that’s relevant?

I don’t know if I’m qualified to respond to that question. Certainly, as I understand it from clinicians that we deal with, individuals who are diagnosed with dementia don’t necessarily immediately lose capacity to consent to their healthcare. So, they are still able to make decisions with respect to their healthcare to a certain point. I think, as I understand it, you get to a stage with an Alzheimer’s diagnosis where you actually do lose capacity to consent, to make an informed decision about your healthcare. That is the point at which your substitute decision-maker would then be making those decisions on your behalf. I hope that answers the question. Because, essentially, whatever your medical circumstance, you are always able to make your own healthcare decisions if you have the capacity to provide informed consent. It’s only if you don’t that your substitute decision-maker would be making those decisions on your behalf.

Yeah, absolutely. It’s important to note that if you have capacity, if you’re able to make decisions, then you will be the one to make your decisions, that’s how it would be. This document is only for when you can’t. And as Susan said, just because somebody has early dementia diagnosis, that doesn’t mean, necessarily, that that’s going to change, but there are indicators of capacity that clinicians would be looking for and, of course, it’s very case by case. But that’s a good point. Yeah.

Kelsey, there was a follow on that I will just respond to here, asking who determines if you have the capacity to provide informed consent? And in Canada, the law states that all adults are assumed to have the capacity to consent, unless it is found otherwise. And generally speaking, as Kelsey alluded to, let’s say you are an Alzheimer’s patient and you’re being followed by your general practitioner, they may, at some point, do a certain test to determine what your capacity to consent is and might consult, for instance, with a psychiatrist or some other specialist if you start having difficulty making decisions. And, essentially, it would be a decision that would be made like that in consultation with healthcare professionals as to whether you have gotten to the point in your illness where you are no longer able to provide consent.

Great. Thanks, Susan. So another question, if you could give some examples of some of the common decisions a substitute decision-maker might have to make for a person? And I know that in our advance care planning documentation, you said and the kit says that we can’t think of absolutely every situation that may come up, we’re more so focusing on beliefs and values, so that those beliefs and values can then help inform your substitute decision-maker of the types of decisions they might have to make. But do you have any tangible examples of what they might have to consent to or say no to, potentially?

I think COVID is on all our minds at this time and I’ll give a very specific example for myself, where I had a discussion with my substitute decision-maker, that in the event that I was not able to speak for myself, that I would not choose to be on a ventilator. So those are, I think, the kinds of things that, for instance, you’re in a coma or you’re deeply unconscious or something, your substitute decision-maker would be making that kind of decision for you. They might be making decisions on life-sustaining treatment. For instance, let’s say you have a condition that makes it difficult or impossible for you to swallow, so how are you going get hydration and nutrition? If you have decided that you do not want any artificial hydration or a feeding tube, then that would be the kind of decision that your substitute decision-maker would have to make on your behalf. They would have to articulate that you had said, even if it’s required to save your life, you do not want artificial hydration or nutrition. So, those are kind of the really dire kinds of situations that might occur.

Thanks, Susan. Just a quick follow-up on what we talked about a moment ago about capacity, just a reminder that if you have more in-depth questions, that it might be appropriate to set up a call with your doctor or nurse practitioner or other healthcare provider. And just another quick note is with capacity, it’s often not a line that you cross and that’s it, capacity can sometimes come and go, so that’s just another thing to keep in mind. And, again, if you have specific questions about your own capacity or what might happen in the future, you can definitely set up a call with your own doctor to try to get into that a little bit more.

Another question. So you mentioned earlier in the presentation, Susan, that it’s a good idea to update and look at your advance care planning documents every three years. Are there situations when it might be helpful to do it more often or are there certain things that you might want to consider?

Well, I think if your health situation changes, you certainly want to review that. If, for whatever reason, your existing substitute decision-maker is either unable or unwilling to continue in that capacity, then you obviously need to identify someone else who could take that on for you. But I think the main thing with respect to the advance directive is just revisiting it on a regular basis or if your health circumstances or life circumstances change.

Thank you. And if you’re making those changes to your documentation, would you want to get everything re-witnessed again, like do the whole process again?

If you’re making changes to it, yes, you would need to get it witnessed again. Yeah. That’s my understanding, anyway. If you’re simply updating the document as it stands, then you can simply sign it and date it. But if you’re making changes, then you do need to have it witnessed because, essentially, it now becomes a new document.

Yeah. Okay. This is another just clarifying question, will my DNR be honored if I am unconscious? And I think it’s important to note that a DNR would come into effect when you are dead, so you would be … The reason that you would be resuscitated is because your heart has stopped. As Susan mentioned, if your do not resuscitate order is nearby and accessible to emergency services, then they will honor it. But if they can’t find it or it’s not there, then there is a chance that you would be resuscitated. Susan, any comments on that?

Yeah. I think the important distinction here is if you’re unconscious, then you could expect to be treated because you were unconscious and you are still alive. If you’re alive, you’re going to be treated. And if it’s an emergency situation, the emergency responders will do what they need to do to keep you alive.

Okay, thank you. Just reading through additional questions here. So one more question just to clarify the different documents, so can you clarify, again, the difference between a will and an advance care plan, any advance care planning documents, advance care directives and sort of when those different documents come into play?

Well, I am certainly not a lawyer, so you might want to speak to your lawyer about that. So a will is a legal document that specifies, essentially, how you want your property taken care of, as I understand it, and financial matters and so on. An advance directive, which is the document you would create as a result of going through the advance care planning kit, let me put it that way, the advance directive specifies your wishes with regard to healthcare in the event that you are not able to express them yourself. I hope that helps.

Okay. That’s a good answer. Thank you, Susan. This is an interesting question, so this person is wondering when they’re going through their advance care planning process and they’re thinking about things like their values and beliefs and what they would want or not want, how much weight should they put on those wishes, those personal values and beliefs versus those of their family members, mainly their grown children, and what they may think or want for their parent?

Your advance directive is an expression of your wishes, and those wishes will be arrived at based on your values and beliefs and, probably, the values and beliefs of those closest to you. So I think it’s important to have the conversations about your wishes and your values and beliefs with your family, for instance, your grown children. And as I described in the situation of the couple in our workshop in Ottawa, their values, beliefs and what they might wish for you may diverge from your own wishes, but those are your wishes and it’s your decision as to how those wishes guide your decisions in the advance care directive. You may choose to respect the wishes of your grown children and that’s your decision, even if they conflict with your own wishes, but it’s your decision.

Thanks, Susan. That’s helpful. I’m just going through more questions here and seeing if we can get through a couple more before we call it a day. I’m also seeing quite a few questions coming through about medical assistance and dying, unrelated to advance care planning. So if you did have questions about that, again, please send us an email and Nicole and I can follow up with you directly with some resources. Okay, I think this is a good question. So when we’re talking about the hierarchy that is sort of there as a default, does common-law spouse count as spouse in that hierarchy? Would they be the first person in most situations?

I suspect there’s a legal answer to that and I would encourage you to research that. But I believe that, in most provinces, there are, I’ll call them, regulations, if not laws, that define what a common-law spouse is. And my guess is that if the person meets those regulations or legal requirements, then they would fall into that category as well. But if you have any concerns about it and that is the person you want as your substitute decision-maker, then you should designate them as such.

Thank you. And can your substitute decision-maker be in your will as a beneficiary?

Ooh, good question. I would say … And, again, I would suggest you seek legal advice, but I would say the answer to that is yes, because, for instance, let’s say it’s your spouse, I don’t think the law would find in any way that you could prevent your spouse from being designated as a substitute decision-maker or alternately, not allow them to benefit from your death. So I think the answer is yes, but legal advice is always helpful with these types of questions, so if you’re doing your will, ask your lawyer. Ah, someone just said, “You are correct for the reasons you cite.” Thank you.

All right, I think we can get to one more question. So you spoke, Susan, to if people live in different provinces. So if my substitute decision-maker is my adult child living in BC, I can have that person be my decision-maker if I want because they’re, in theory, going to be accessible over the phone and that kind of thing. Do you know of any limitations when it comes to people out of the country? So, a grown child living in the U.S., for instance.

I think the relationship would be more important than the location of the related person, but I think you really want to consider accessibility as the primary criteria and is that designated person going to be accessible? And I think, also, remember that in an emergency, healthcare practitioners are probably going to act before they start trying to find someone who can speak for you, if, for instance, you are alone whenever this emergency occurs. But, for instance, I was looking at the Healthcare Consent Act for BC and there is a requirement of due diligence on the part of healthcare providers to try and identify the person’s spokesperson or substitute decision-maker.

So, I think the main thing is accessibility and in this day and age, with cell phones, so ubiquitous. For instance, if you have your in a case of emergency contact in your phone, that is probably the easiest thing for healthcare practitioners to access to be able to identify your substitute decision-maker quickly. And most people, unlike me, are checking their messages all the time, so I’m sure they would respond. They might even set a special tone for that kind of an emergency call, so … Yeah. I think accessibility is the really important thing in terms of who you designate.

Great. That’s helpful. So we’re almost at 4:30, Eastern. Susan, I’m wondering if you had any final comments or tips or anything for our attendees this afternoon?

No. I think I probably made it clear how important I think it is that each of us have an advance care directive, and I’m really delighted to see that many of you have found this webinar helpful and that it’s maybe answered some of your questions and, hopefully, encouraged you to go ahead and ensure that you designate a substitute decision-maker and prepare your advance directive. So, thank you for your questions and for your engagement with us. And thanks to Kelsey and Nicole for so seamlessly handling the webinar.

And thanks, Susan, for joining us today. It was great to have you taking us through this very important information. I think we all learned a lot and, hopefully, we can all walk away and do some additional learning and reading and completing of these documents. So to all of you, who took some time out of your afternoon to join us, we appreciate it. We’d love to hear your feedback about how this session went. Once you click exit or once we shut down the webinar, you will get a survey popping up on your screen, so if you could take a few minutes, please let us know what you think and we’ll be sending out follow-up documentation to you in a few days. Thanks, everyone.

Thanks, everyone. Bye.

Bye.