The New Unwelcome Conversation To Save You Additional Grief

Joanne Ready a retired registered nurse who now volunteers with Dying with Dignity as an independent witness for MAID (medical assistance in dying).

The unwelcome conversation we're talking about is advance care planning.  When you have this conversation while you're in good health not only gives you peace of mind, it releases your family from having to decide for you. You're also freeing them from additional grief of worrying if they did the right thing.

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Transcript

Anne DeButte  0:00  
Hello and welcome listeners to another podcast in the series Let's Talk about Grief. 

My guest on today's show is Joanne Reddy. Joanne is a retired registered nurse who's worked in oncology and physical rehabilitation. Joanne, wasn't ready to give up being retired and now volunteers for an organization called Dying with Dignity Canada.  We'll hear a little bit more about that from her in a moment.  During our conversation today, we'll begin to demystify for you the conversation around death and dying. We'll delve into palliative care, MAID, advanced care planning, and the importance of having those unwelcomed conversations. These are the ones that we keep pushing away and don't wish to have with ourselves, let alone our loved ones. Joanne, thank you so much for agreeing to be with us today.

Joanne Ready  1:02  
Thank you for inviting me as a guest today. I'm very grateful for the opportunity to speak with you about topics that are regarding the new conversation that I think people need to have.

Anne DeButte  1:16  
Absolutely. And we'll be walking through that as we move on. Can you tell the listeners who perhaps don't even know what that dying with dignity is even an organization?  Can you tell them a little bit more about it and what your role is there? 

Joanne Ready  1:34  
Sure,  Dying with Dignity was originally co-founded by a registered nurse, Marilynne Sequin, back in 1980, when she was working with patients who were quite seriously ill. She heard from so many of them about how they were suffering and felt the need to provide care beyond just the physical.  She spent a lot of time listening to them and wanted to help do something about their suffering. In the end, she wrote a book in 1994 called a Gentle Death. Through the years, Dying with  Dignity Canada took many shapes and forms as a grassroots organization.  Today, their Head Office is in Toronto.

 it's quite a growing organization now and has several chapters across Canada. In most of the Provinces, it's overseen by a very active board and team and operates 7-days a week to offer education, access,  and support to the public.  They do have a web website, which is accessible at https://www.dyingwithdignity.ca. They also have a Facebook page.  On their site, you will see you have access to current information, as well as webinars and access to downloading information for yourself. You can call and speak to somebody if you need some support.

It's interesting how I got involved, I wanted to do something after I retired.  I experienced not the death of a person but the death of a pet and found that it was done with such dignity and compassion euthanizing our dear pet we had for 17 years.   I started looking into euthanasia and what Dying with Dignity was doing, and I applied for their independent witness program and joined the independent witness program in September 2018. There's a process for someone becoming an independent witness, with a background check because you are doing volunteer work. 

What was involved prior to the pandemic, was we'd go to the person's home, hospital or an institution, where somebody was making an application for MAID (medical assistance and dying) as two people are required to be witnesses to a signature for the applicant. 

Our sole job was to witness that person's signature and I must say it was very humbling and very honouring to be able to do this.  We do it now through zoom.  We still carry out that function and it provides such relief for people to know that they are able to have somebody to witness.  It's anonymous and doesn't have to be somebody that they know, because sometimes these situations are still very controversial. It helps to have somebody independent come to do this.  This is done virtually on zoom they are able to sign and we witness their signature so they can begin the process of their application. Once we sign, then a 10-day reflective period begins. Then they are also assessed by two physicians to meet the criteria for the procedure.

Anne DeButte  5:38  
Now, that's quite a process. So after the signature is given then there's a 10-day reflective period, they are also assessed by two independent physicians. It seems there are a number of safeguards in the process that have to be in place. 

To think your volunteer career began almost like a legacy for your beloved pet? Now, that's not an easy decision, is it to euthanize a pet? It's something that you certainly don't take lightly. 

MAID can be controversial because it's a relatively new process, people's beliefs and understanding around it haven't quite caught up to the legislation, which I believe was amended from the Criminal Code in 2016. 

Joanne Ready  6:36  
That's right. Yes. 

So as you can see, some of the points were both beginning to raise here, why it may be necessary to have that conversation. However, if you're the person with a terminal illness, who's making this decision and knows that your family isn't going to be supportive? Do they need to have everybody on board? Or can they make that decision themselves?

No this is totally an individual's choice. And some people don't have the support of their family. They can have a journey supported by people outside of their family circle.  They can have people that are supportive through the health care system, their family physician, it all depends. But I think, again, you raise a good point because that is why we do need to start having some of these very important conversations. 

The other role I play in dying with dignity, in our Ottawa chapter is I'm part of the executive committee. My role there is as an outreach committee lead. And so we have a contact list of various organizations. Our mandate is to try to continually update the list, and contact those organizations, to let them know about our presentations on Advanced Care Planning, and on MAID (medical assistance in dying). If people want to educate themselves, then we can provide free zoom presentations now because of the pandemic. Previously, we'd go in and give a presentation.

Anne DeButte  8:25  
So there are two good reasons we've just mentioned, medical assisted in dying MAID and Advanced Care Planning. Can you share a little bit about what and why people need to think about advance care planning?

Joanne Ready  8:42  
Most of us have heard about wills, and the need to have a will in place.  A will is very confined.  Advanced care planning and what that does is it makes us think about various scenarios in our life, such as if I got sick with a serious illness if I had a terrible accident.  What kinds of things would I want or not want to have done to me as a person? So it walks you through various scenarios to make you think, what are your values? What's important to you, so that you don't have other people making those decisions for you.  It goes beyond just the DNR "Do Not Resuscitate". So that if you end up in hospital, and you've decided that you do not want to have antibiotics given or various other types of medication,  or you don't want to be intubated. You don't want to be mechanically kept alive, even to the point you don't want to be fed unnaturally. You don't want to have surgery. I mean, you don't want to have alternative treatments. There are many things to consider. There's an Advanced Care Planning kit that you can download from the Dying with Dignity website There are many other organizations that also have these Advanced Care Planning kits. And you just walk through it and very easily just think about what it is and if it isn't you want. 

You can use this kit can actually to help you start the conversation with your loved ones.  Such as your husband, your children, your parents or whomever.  It also makes them aware of what it is or isn't that you want. It helps them to understand what's important to you. And hopefully, it'll be respected when the time comes. These important decisions in life have to be made, it's kind of like a map, it's already there to help guide people to walk through this when perhaps you're not going to be able to verbalize what it is that you want. Because if you do have a stroke, and you're not able to express what you want, then this Advanced Care Planning guide can help them make the decisions for you. So it's basically who's going to speak for you when you can't speak for yourself. And that is why advanced care planning is very, very important. 

Anne DeButte  11:19  
Absolutely.

I know as a grief coach, I've often helped a family member who may have had to make those decisions because they didn't know what the person wanted and then they are left with the guilt and the "what if" thoughts.  What if I'd have continued treatment?  Or what if they didn't have the surgery and so the guilt just gets piled on complicating the situation? Their bereavement then is much more difficult.

Joanne Ready  11:55  
 Right, it becomes complicated. 

Absolutely. And then you have the family dynamics, where they're arguing, they're bringing their values and beliefs about what they want that person to have. And before you know it, you've got a family feud, which is the last thing you want. You need support, not to have to be worrying about making peace with a family. Now you can begin to see listeners why it's so important to have these conversations before you even need them. Wouldn't you agree? 

Yes, we make decisions, and we plan for so many things in our lives. You know, we plan for university, for getting married, plan for our first child, buying a home, going on a major vacation, all of these things, and we save for them. We do the pros and cons before we make major decisions. So why would we not want to plan for a major illness or our death, even if we're not at end of life? And we were wanting to we have particular things that we want or don't want in how we die, 

I think what's happening is society is starting to stand up and take notice that our decisions don't always have to lie with the health care system. The people who are the physicians and specialists, we have a choice, we can empower ourselves with knowledge, educate ourselves and become part of that team to help make the decision. And then it's up to us. Whether we do take treatment, whether we do have surgery, whether we do or don't comply with whatever the treatment options are. And the closer we get to end of life, the last thing we want is people suffering. And that is a very subjective thing for us, you know, how I feel and how someone else feels is totally different. And so we have to respect that. And so following through on a plan is very important, I think and it helps with the letting go. And with the relief that comes with respect and acknowledging what someone else wanted. Instead of having these debates and disputes within the family surrounding questions of what if we did this? Or I know she wanted that, but you think she wanted this, you know, and it just resolves things much easier and makes life and death equally, but more acceptable.

Anne DeButte  14:46  
Yes,  rather than thinking that the event is far away in the future, as you've mentioned, it could be a car accident, a diagnosis of a terminal illness. Who knows, we all know that we're not going to escape this world without dying. It's like birth, taxes and death is a certainty so bring it into our lives rather than pushing it away. Because I think when you've got those plans in place there's a certain relief.

Joanne Ready  15:17  
And if things change, you can always revisit and make those changes, just like you do with a will.  Just like you do when you have made plans for other things. You know, you revisit those things, and you discuss them again, and revise them. And it just seems to be that, for some reason, talking about death, talking about dying, conjures up a lot of fear. And it makes people feel uncomfortable. And I think that's the thing that we want to try to change. 

Anne DeButte  15:37  
Yes, 

Joanne Ready  15:53  
we want it to become part of a conversation that we can talk about and not fear and not feel uncomfortable about 

Anne DeButte  16:03  
and by doing so, in educating yourself you are actually lessening that very thing you're fearful of.

 Before MAID we have palliative care.

Joanne Ready  16:15  
Well, I think when people think about palliative care, the word itself, you know, it, it makes people think about things like sadness, fear itself, confusion. And for some, it makes them feel hopeful, relief, a willingness to want to participate in what palliative care means. And I think, in days before, we involved our communities, so what would happen is, we knew somebody in our area or neighbourhood was sick, we would help the family out, we would bring food, help take care of children, we would help provide support for, you know, whoever the significant other was, while the person who was ill was going through their illness. And then if they died, they had the community support of helping the family go through the grieving process. And I think that that is a key component that's missing in today's society. But I think we're trying to build that backup. Again, I think we're trying to get in touch with that again. 

Palliative care is struggling, in some ways, they say they don't have enough funding. So I think there's an emphasis on that right now and trying to relook at how Palliative care is funded, how palliative care fits into the team, in a hospital environment in a community environment, because they don't just administer medication. There's so much more involved, there's a whole team of professionals, social workers, nurses, physiotherapist, who come into the home, if you're at home, and provide the necessary skills needed to care for that person. There usually is a huge pain component, then they manage the pain. And the sooner a person can begin palliative care there,  the better I think things can be managed.  The longer it takes before palliative care is introduced, then they're fighting with a lot of other complications that have sort of occurred in that patient's journey. When they talk about the end of life process and palliative care, the closer that person is to end of life, then, of course, there's a lot less physical activity involved in comfort with that patient. But it becomes more focused than on medications, obviously, I think that especially now with this pandemic, the isolation of not having people there, if a person's in hospital makes it very difficult, whereas if a person is at home, at least I could have somebody with them, but previously, you would have a lot of people involved in helping to take care of somebody if they were at home, even if there were palliative care professionals in the home.

Anne DeButte  19:26  
Yes. Now, just the very word. As you mentioned, palliative care conjures up so much, but it's not just for terminal illness. When we were chatting earlier you mentioned that Palliative care is given to other patients. Can you speak to that?

Joanne Ready  19:49  
As I said the earlier you can be consulted for palliative care, the better you could be somebody with chronic pain and require palliative care service. For pain management, sometimes learning how to maximize your pain medication to a point where then you can have a better quality of life, just learning how to manage your medication. You could be somebody who was in a serious, you know, accident, and you're in recovery, and you have palliative care go into your home, and they can help with your post-surgical treatment. Palliative Care doesn't always mean end of life, but it does play a huge role in end of life care.

Anne DeButte  20:35  
Okay. Do you think, as MAID becomes more accepted that people may, if they have a terminal illness, or even a neurological illness will choose MAID? Rather than going, I guess you could call palliative care a traditional route, could you? 

Joanne Ready  20:59  
Well right now, I would say that MAID accounts for about 2% of all deaths in Canada. And as of December 31, this year, there were 6,696 deaths that were from MADE in Ontario 546 of those deaths occurred in Ottawa, 42% were provided in hospital. And 63% of those had a diagnosis of cancer.  Cancer patients usually have exhausted all their treatment options, before they choose something like MAID.  I would say for people like ALS patients, that's you know, a deterioration basically, of one's body, the muscles, then the nerves, some people who have a neuromuscular disorder such as MS.  

A lot of times, it's once people have exhausted treatment options. And those treatment options can be traditional, or sometimes people seek alternative treatment options and travel to other countries hoping that they're going to have an extension to their time. Basically, you're looking for a cure, which a lot of times there isn't, versus, you know, hope.  

Anne DeButte  22:23  
Yes, yes

Joanne Ready  22:31  
Hope is a big thing you don't want to take hope away from anyone. But I think that at the end when a person reaches a point where they say no more because they know in their heart that they've done everything they can, and they just don't want to suffer any longer. For them knowing MAID is there as an alternative to treatment because actually, it's a medical procedure, it is still an option to treatment. So I think that it can be a seen as a, an option to treatment. So I know, it is something that many people struggle with, because of the intent. Palliative Care says they do not hasten death, and with MAID, the intent is to provide a peaceful death. 

So there are ethical dilemmas in there. And there are people who are conscious objectors. And that's fine because you still have to go through a process of meeting the criteria, there are standards in place. As everybody knows who listens to the news or reads the paper, there are ongoing challenges in the courts about MAID medical assistance in dying and where people stand on it.  

You're looking at probably 85% of the Canadian population are in support of medical assistance and dying for people who are suffering at the end of life or in other situations. And the challenges right now are with mature minors, and people who have things like dementia.  Alzheimer's, that's another area for advanced consent so that if you have something like Alzheimer's and you know that years down the road, you're going to lose the ability to give consent to the procedure, then you can ask for an advance request. So you can say that you want to consent to MAID when you can no longer actually verbalize that.  Then it can be recognized as your request and it can be honoured. So there's still lots of things to work out but I think as a whole it's co it can coexist with palliative care. 

I think it is something that in our new conversations, talking about death and dying, talking about what kind of death we want, when we want it. These are healthy conversations. They're not conversations that we need to fear. 

Anne DeButte  25:20  
No,

Joanne Ready  25:20  
We have to look at the other side of it too, is that we are having all of these new communities arise like death doulas, who are there to help people when they are dying. They provide support to the person who's dying, but also to the family. We have community deathcare associations, again, many people who are willing to go out and help support people who are ill, people who are dying, and their families. Because grief is also a part that we have to embrace, it's not something again, that we should fear or put away in the closet, and hope it doesn't come back to bite us. Because if we don't go through the process, it just keeps, you know, coming back to us over time when we least expect it. And really, it's there are many different tools, there are many different skills that people can learn to be able to allow grief to just be a part of their life. And it's something that I don't think you get over. And I don't think our society should be expecting people to three days after a death and a funeral and whatever, to be able to go back to work and function as they did before. So it's important for people like you Anne to be available to help with bereavement.

Anne DeButte  26:57  
Yes indeed. One of the things I say when I'm at workshops or giving talks. Grief is like landing in a foreign country and not being able to speak the language because it will hit you. It's a small word, but boy, does it pack a mighty punch. And it isn't just reserved for death. We've all experienced just virtue of the fact we have lived through COVID just cancelling plans, not being able to see our families, our freedoms, that is all a form of loss. And when there's a loss, there is grief. 

Absolutely. Now, I wanted to talk about this, I realized listeners, this was a very, very heavy conversation. And hopefully, you have been able to stay with us to the end because I'd like to bring it around to a conversation as Joanne mentioned hope. And when the person has chosen, MAID they're relieved, their demeanour changes. And I think you when we were chatting earlier, you mentioned this, can you give a few instances of what you've seen?

Joanne Ready  28:26  
Well when I have gone into a home or into the hospital room, and people are either alone or they're with a significant other. And they've come to terms with the fact that they want medical assistance and dying and they have completed their form. And we are there to witness a signature. Even that process that small piece. The relief on their faces is I can't even really express except that the physical appearance is just incredible. Prior to us doing the paperwork, the person looks sometimes frightened or tense. And then once it's all done, their shoulders drop, they release a breath of just you know relaxation.  Sometimes they smile, they are so thankful their words of thanks are incredible. Sometimes their family member cries because they know that this is getting closer to the finality of their loved one's wishes.  Sometimes their family members are happy, they're joyful with the applicant because they know that the suffering is going to be over.  They'll then be able to actually celebrate a life that has been lived well or celebrate a good death.  Whatever you want to call it, but it is amazing to see and to hear the words, and see the physical being of the person when, when they know that, they're on their journey. Yeah, yeah, it's quite amazing.

Anne DeButte  30:25  
It's almost empowering the person

Joanne Ready  30:29  
Yes, it is.

Anne DeButte  30:30  
So they didn't have any control all of a sudden have control. And I think that is so important for so many people. I've heard stories of where, as you said, people are so relieved. They've gone on to plan a full funeral. they've invited all their work colleagues, their friends, that your family may not even be aware unless you've written down all the names and how to contact them. And they've been able to almost have a celebration of life. And one of my guests on the show has mentioned that this was a great comfort to the family because they then knew that they had all these people who loved their loved ones. They heard stories that they would never ever have heard of. And the best part of all was, they had even more people to support them on their journey. 

Joanne Ready  31:36  
Exactly. 

Anne DeButte  31:36  
So it doesn't have to be a dreadfully sad, yes, you work through that. But that's all part of the grief. But look at the potential or the possibilities.

Joanne Ready  31:51  
Yes, yes. There. There are many stories. And if you go to the DWDC (dying with dignity Canada) website, many people put their testimonial on their stories about celebrating a MADE death and what their experience was.  CBC has had many stories of people who have experienced a death and what that's like both for the person who is celebrating their death. Also, doctors who've been involved with providing a MAID death and nurses. You know, I think the more again, the more we talk about these things, the more we demystify, what this is all about, the more we take away the fear, the more we share in these experiences, that help us to celebrate a life. And all the more reason I think that we need to plan ahead. I know with these unwelcome conversations now more than ever, we need to have them. The pandemic has brought this out, unfortunately, because it has we've had lots of deaths because of the pandemic once that we have not been able to prepare and plan for but we can now by educating ourselves. As we always said, you know, education is knowledge and knowledge is power. While the power rests with us. I mean, it gives us the ability to be autonomous and to choose. And to do that with people around us who help us to make decisions. 

There's a researcher, Dr Thaddeus Mason Pope, who recently in November of last year, did an Angus Reid Forum. When he surveyed people, he found that 56% of Canadians don't know what the end of life wishes are for their loved one. And 66% of Canadians don't know what their end of life wishes are for their spouse. 42% of Canadians have experienced disputes as a result of post-death confrontations because of not knowing what their loved one wanted. And I think advanced care planning is paramount. The Canadian Hospice Palliative Care Association website has something called Speakup with an Advanced Care Planning date.  Dying with Dignity Canada has an upcoming webinar on Advanced Care Planning. The Ottawa chapter tries to do them monthly and we also have Advanced Care Planning, zoom presentations, so you're not alone. There are lots of people that are interested in finding out what this new conversation is about. And in there, we also do MAID presentations. So if people want to know what's involved, about medical assistance in dying, please find out. Because there's nothing wrong with finding out what something is about. It doesn't mean you have to participate. It doesn't mean you have to choose that route. But at least you educate yourself. And you know what these topics are about? Especially when it comes to what is the government debating. What are people arguing about when they talk about these topics? I think it's really important to have simple conversations with your family. 

Anne DeButte  35:32  
Absolutely. 

Joanne Ready  35:33  
Learn how to open up that door, and not have you know, the elephant in the room.

Anne DeButte  35:38  
That's right, that infamous elephant in the room  You had mentioned that getting one of the Advanced Care Planning kits is an excellent way to begin that conversation. And I love how you said that information is power and to educate yourself and gives you some control, you have that within you, this is your power, you can take it back. Would you like to give the website out again, Joanne where people can find this information?

Joanne Ready  36:16  
Sure. https://www.dyingwithdignity.ca.

Anne DeButte  36:20  
Okay, I will make sure that goes into the little blurb that I put up about the show, or people can get hold of me. Joanne, thank you so much for wanting to be my guest today. I feel that we went fairly deep into this conversation and I'd like to thank you for having this conversation with me. I truly believe it's one that we all need to have. So thank you very much for being my guest on the show today.

Joanne Ready  36:53  
Thank you 

Anne DeButte  36:54  
Well listeners, as they say, that's a wrap. If you or somebody you know is struggling, please reach out to me as a grief and loss coach for support at https:www.understandinggrief.com.   On our show next month I'll be interviewing a medical intuitive and psychic Julie Ryan.  If you click my Follow button, you'll be notified when a new podcast is released. As you can see, I like to include all possibilities to help you talk about your grief and also to help heal your broken heart from loss. Until next time, bye-bye for now.

Transcribed by https://otter.ai