Episode 49 - The Conversations We Avoid and Why They Matter: Advance Care Planning with Connie Jorsvik
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In todays episode of Your Estate Matters, Nicole and Greg sit down with Connie Jorsvik. Connie is a seasoned healthcare navigator, independent patient advocate, and founder of Patient Pathways. With over 25 years of experience as a registered nurse, Connie has helped countless families navigate Canada’s healthcare system and prepare for the unexpected.
She explains why advance care planning is more than paperwork, it’s about having courageous conversations with loved ones before a crisis strikes. From representation agreements and advance directives to navigating dementia and avoiding hospital “revolving doors,” Connie shares practical wisdom and powerful stories that reveal the cost of not planning ahead.
Whether you’re supporting aging parents, facing your own health challenges, or simply want peace of mind, this conversation will inspire you to take action today rather than leave decisions to chance tomorrow.
Nicole 00:00:02 Hello and welcome to Your Estate Matters with your host, my colleague Greg Brennand and myself, Nicole Garton of Heritage Trust.
Greg 00:00:09 Your Estate Matters is a podcast dedicated to everything estates, including building and preserving your legacy.
Nicole 00:00:16 If it's estate related, we'll be talking about it. We're having the conversations today that will help Canadians protect their families, their assets and their legacies tomorrow.
Greg 00:00:33 Connie is a well seasoned healthcare navigator, independent patient advocate and founder of Patient Pathways, a B.C. based company that helps individuals and families navigate the complexities of the Canadian health care system. With over 25 years of experience as a registered nurse in general surgery, cardiology and maternity, Connie brings both clinical insight and personal compassion to her work. Connie began your career as a registered nurse and went on to found Patient Pathways. What inspired you to make the shift into health care, navigation, and patient advocacy?
Connie 00:01:12 I've always been an entrepreneur by spirit, so I have always done little things in between. Nurses have generally on 12 hour shifts, have 4 or 5 days off.
Connie 00:01:25 And so I was always filling in the gaps. But I was also an advocate from I've been an advocate my entire life. From the time I was a toddler. I've advocated for other people, so it's a natural piece for me. And I was starting to hear rumors, probably around 20 years ago, about health care advocates in the United States. And my own body was starting to break down from the 12 hour shifts and the night shifts and the grueling schedules. So I just kind of was looking for the next piece, and one of my coworkers came to me and her parents had been in. Her mom was the caregiver, her father for the father, and the mother ended up in care first. So that made it an emergency to get father into care. And they were in different hospitals in different cities, so was tearing the family apart. So I not only got them into the same hospital, I got them into the same room within 24 hours and I went, there's got to be a job in this.
Connie 00:02:30 And so I started exploring, through mainly through the United States, because there wasn't there was nobody like us in Canada at that time.
Nicole 00:02:38 And so was that the story that led you to realize this was the work you should be doing, or were there other, situations or clients that that showed you that this was your path?
Connie 00:02:49 I decided to kind of just jump off the deep end. I knew that I needed to do something other than Then bedside nursing, and I knew that I was a very good advocate for people. So throughout my career, I was always putting my patients first. And I knew even then that there was a growing need for somebody to stand up for people. I was seeing people all the time who had no idea what was happening in the health care system. They didn't know how to be patients, they didn't know what they should be asking for. And so it was a slow building momentum over probably 2 or 3 years.
Greg 00:03:28 Advanced care planning is a term that many people have heard but may not fully understand.
Greg 00:03:34 How do you define it and why is it so important for Canadians, regardless of age or health status, to engage in it?
Connie 00:03:41 So advanced care planning is a series of conversations and documents to allow you to speak for yourself or allow others to speak for you when you can't speak for yourself. So it includes representation agreement, which is for health and personal, a power of attorney, which is for legal and financial, and possibly an advanced directive if possible, which is a written document, legally binding written document and then conversations with your loved ones. And if people do nothing else, if they have conversations, courageous conversations about what their values and beliefs are and their preferences for care at the end of their lives, that's the most important part of advanced care planning. So it's an umbrella of documents and conversations that is ever ongoing. It's not do it once and you're done.
Nicole 00:04:38 So can you tell us about a scenario or a patient example where advance care planning reduce confusion or helped with decision making during a medical crisis?
Connie 00:04:48 I do a lot of education around advanced care planning, and one of the things that concerns me B is that spouses automatically assume that they will be each other's representative.
Connie 00:05:01 It makes sense, but we don't also don't want to hurt each other's feelings. So I was having a conversation with a couple and I could tell that there were capability issues with him. He wasn't following the conversation, he wasn't sure why I was there. And so I started to have a conversation about what a representative was and what the duties were. And then they admitted to me that he had mild to moderate cognitive decline. So I dove in deep with the conversations around dementia, what he would want during, you know, if he if as his dementia progressed, we talked about an exit strategy, when would he want to be stopped being fed? When would he want to stop antibiotics? About a month later, I got a call from her saying that he had been admitted to hospital with fairly severe pneumonia. And so because of we had done the advanced directive, he had said very clearly, I don't want to go down this dementia path, I want an exit strategy. And so he was able to say, I want to stop antibiotics now.
Connie 00:06:11 And because he didn't start antibiotics, he went developed full blown pneumonia and he died quite quickly. So his wife was extremely grateful that we'd had that conversation. And she was really clear on when to stop.
Greg 00:06:26 Have you encountered situations where the absence of an advanced care plan created challenges or distress for families? And what lessons might our listeners take away from that kind of experience?
Connie 00:06:37 I get a lot of phone calls from families where, and I'll give an example, where the son phones and says, we've just found out that dad's going to be discharged from hospital tomorrow. We didn't even know he was there. Nobody called us to let us know that he was there. We know that he can't manage at home. He can't get his own groceries. He can't get his own medications. He can't get himself to him from the bathroom. And yet they're sending him home. And then I'll say, do you have a representation agreement? And they'll say, oh, what? And with that representation agreement, the family has a lot.
Connie 00:07:14 The representative has a lot more power to say, you know, I'm acting as my dad. He cannot manage at home. So it stops the revolving door of dad going home and ending back up in hospital. And once you are in that situation where capabilities in question, then a representation agreement is very unlikely that you can do one. And so it just keeps on going downhill from there.
Nicole 00:07:43 So for people that don't know what is a health care navigator.
Connie 00:07:47 It was Canadians who first came up with the term I had was talking to one of my colleagues in Ontario and in the United States. They call themselves patient advocates. And I was really uncomfortable with that term. It was seen as inflammatory. So I would go in to doctor's offices and they would get their backs up before I was even in the door. So I thought, I'm not really fighting for people. Most of the time I'm just helping them with the health care system. So we were talking and we said, what about the term navigator? And it was just starting to be at the forefront.
Connie 00:08:25 So a healthcare navigator is different from an advocate because a health care navigator holds your hand, showing you the way in the health care system as well as I when I'm in the advocate role, I am stepping out in front of leading the way. They're subtly different, but really importantly different.
Greg 00:08:45 So what types of situations prompt people to reach out to patient pathways? Is it mostly crisis drawn or people are more becoming proactive in seeking support?
Connie 00:08:56 I have been pushing the proactive part for the last several years, so I go out and do a lot of teaching at senior centers, at churches, wherever I can get an audience to help people be proactive. It's really difficult to be in this situation, in crisis, and I don't like being there with people, especially now with our health care system under such incredible strain, it's really hard to jump into the middle of the ocean in the deepest part and do this. So I it's probably 50 over 50, you know. People are being proactive. Some are calling in crisis and without a representation agreement.
Connie 00:09:39 And if the adult is incapable, there's not a lot that I can do to help. And so I ended up coaching rather than being on the front lines.
Nicole 00:09:47 So what does the process look like when someone first reaches out to you?
Connie 00:09:52 Depends on what they're after, whether it is to be proactive, do a health care or a history of where they are in their health journey, where they are in their age, how much they know. And then we'll start with a representation agreement and then move directly into writing an advanced directive. When somebody is in crisis, I just have to gather information as quickly as I can where they are, what their age is, who their doctors are. All the health care history. And then just dive into that ocean. And I spend a lot of time in emergency rooms trying to track down doctors and nurses when I'm in that kind of situation.
Greg 00:10:32 What role do you play in speaking with doctors, specialists or other health authorities on the client's behalf? And can you give us an example of how advocates advocacy changed the course of someone's care?
Connie 00:10:43 I like to think of myself as an assertive bulldog.
Connie 00:10:47 I can go nose to nose with doctors and nurses. It bothers me not the least a little bit. I get a bit of a charge out of it. So I had a client last week who was having increasing back pain. We had tried so hard for over a month to get him the appropriate care that he needed to reach out to his surgeon's office, to get an urgent MRI, to go to a private MRI place to try and get him in to be seen. We tried every single avenue to get him in, and I then I said, okay, well, it's Wednesday, we have to get you to the hospital before Thursday or Friday because that's when the wheels fall off the bus in the health care system. So he phoned the ambulance and he got there and they said, well, we're going to stabilize your medications. We're going to send you home. So I went in and I found his nurse, and I said, if you send him home, I will be calling a lawyer.
Connie 00:11:48 This man cannot go home. He needs to have an MRI. He needs to be admitted. And not 20 minutes later, he was on the schedule for an MRI. And the next, about six hours later, he was in a hospital bed. So I know that I made a huge difference. I kind of felt sorry for his own. He was a pretty young, young man and I'm pretty big and so I just went nose to nose with him and but it had pretty huge results.
Nicole 00:12:18 So how do you offer that support to family members, like especially adult children that are juggling their own lives during difficult decision making moments for their parents?
Connie 00:12:28 I try and take the burden off of them as much as I can. I've got a client right now where both mom and dad are in a bit of a crisis. That often happens is that as people get older, the couple are trying their best to keep each other going with this particular client. She's a single child. There's no other adult children who are involved in the mix, and I coach her a lot.
Connie 00:12:55 We managed to get her mum into an assessment unit. Now we're finding independent living for her dad, and she calls me at least once a day to talk about writing scripts for her. About every time a doctor calls or a nurse calls, who should I be talking to? What should I be saying, and how do I take notes? All those various pieces and wherever possible, I jump in to attend doctor's appointments with the patient, the adult to take some of that load off. I provide the family with notes and summaries so that they have a better idea of what's going on. Because I don't know about you guys, but with my mum I would phone and say, so how did it go with the doctor's appointment, mum? And she'd go just fine. And that was the end of the conversation. And so it took a long time to find out what was actually going on and actually delayed care because we didn't know what was going on. And so I'm trying to relieve that burden for families.
Greg 00:14:02 I've three parents between my wife and I that are over 90, and that's how we always get it was fine. Are you sure? So apparently, was it. Have you worked with people who are navigating both complex medical issues and mental capacity concerns, and what extra challenges come up in those situations, and how do you help?
Connie 00:14:23 I deal with a lot of people who have specifically anxiety disorders, and it's not just the adult, it's their family. I have found that anxiety is just seems to be everywhere right now, and it really interferes with people getting appropriate care. But generally I don't deal with mental health issues, and I don't consider dementia to be a mental health issue. But three quarters of my clients have dementia and the how it affects the rest of the family. So there's always physical issues that go with the mental, with the dementia or cognitive decline. And as you just said with your parents, is that with that cognitive decline, they are not very good historians. They're not able to tell their doctor what's going on.
Connie 00:15:17 And so often there's a delay in care because they're just not saying all the things that are going wrong or they're intentionally trying to hide it. The physical and the dementia go hand in hand because we're old and we're frail and we've got bad backs and bad hips and bad knees and diabetes and all the things that go with it. And the more physical health disorders we have, the more likely we are going to have a dementia component as well. So they're always interlinked.
Nicole 00:15:51 So do you ever collaborate with other professionals like lawyers, estate planners, to help their clients prepare for advanced planning?
Connie 00:15:58 I would love to say yes. I have found that most don't really want to be a part of my team. Occasionally I'll get referrals from a lawyer, but I'm always referring people to estate lawyers in particular, so I've got a handful that I trust implicitly that I know what I know. And so yeah, I refer constantly.
Nicole 00:16:24 I think certainly preparing the advance directive to have somebody medically trained to walk clients through that would be an incredible resource for estate planners.
Connie 00:16:34 Yeah. I had a conversation with not too long ago with a lawyer who happened to be in a booth right beside mine at a at a fair. And I said, do you do representation agreements? He goes, I always do representation agreements. I do well. Power of attorney in a representation agreement said. So what do you do with your representation agreements and how do you teach people what to do with them? Oh, we just put them in the in the box. And I said, well, what if it's needed at 2:00 in the morning on a weekend? Oh, and do you coach, you know, the people who are named as representative and alternate on what their jobs are? No. So I just don't have the bandwidth, quite frankly, to go out and teach everything that needs to be taught because it's a really massive gap, not only within the legal and the financial systems, but also in the hospital system. It's as well we tend to look after the patient as a sole entity without looking at their family.
Connie 00:17:40 And what? What is their illness and how is that affecting the people around them? And so if I had a thousand more hours a week, I would certainly be heading out to. Financial planners and lawyers and doing a lot more teaching around this. And hopefully the health authorities would allow somebody like me to do some of the teaching around this. It really feels like a piece that's been dropped from their education.
Nicole 00:18:11 So you could participate in grand rounds, or.
Connie 00:18:13 If I had my way, I would make advanced care planning a mandatory course for everybody. And so have auditoriums filled with people that they had to know the basics. We teach people about, you know, make sure that they have their CPR every year and various, you know, dangerous goods and all sorts of things like that. This advanced care planning should be a piece of that.
Nicole 00:18:39 So related to that? What misconceptions are out there? Is this a service only for people that are wealthy or very ill, or tell us about that.
Connie 00:18:49 When I first started, I was had a coach and they talked to me about my target audience, and I thought of people who had a lot of money. I thought, you know, do I go to the British properties? Do I go to Point Grey as my target audience? And what I found over the years is that it's middle income people who are really desperate for this kind of support. And so I would say that it's middle income earners that need it. Unfortunately, people who are at the bottom end of the system probably need the most, most support people who are financially destitute. If I could open my doors and get paid to look after everybody, I probably would have to hire a 100 people, maybe more. It would be the need would be massive. It is a for profit business and there is a push in Canada. The Canadian Association of Health Advocates is working on us being professionals. So we have our own association and we can then go to insurance companies and as part of employment benefits to allow us to bill for our services.
Connie 00:20:07 And we think that that would open up the doors to a lot more people who could use our services.
Greg 00:20:14 Could you share a story? you know, an anonymous, version of it, of course, where your navigation and advocacy work made a significant impact on somebody's quality of care or just peace of mind.
Connie 00:20:28 That happens all the time. I'm pretty proud to say that it makes a really big difference. I'm disappointed when I can't make a big difference. So I'm working with a client right now who I know would have been dead probably 15 or 20 times if I hadn't been involved. I've been his health care navigator for over five years. He's had three heart attacks. He blew a piece of his bowel and needed emergency surgery. And as we speak, he's back at the emergency room. I'm able to pick up on clues that things are going sideways for him and get him into the hospital, and he's a terrible historian. So I can go to the hospital and I'll be heading there right after this to make sure that his health care team is aware of his history and are treating him with the seriousness that he needs.
Greg 00:21:20 Right. And at present, there would be no your notes and your records. They don't get put into the medical record.
Connie 00:21:26 That's right.
Greg 00:21:27 Right. And I think that would be very advantageous.
Connie 00:21:30 It would be extremely advantageous. What I do is every single time that somebody Emily goes for him specifically. He's got such a detailed health care history that I make sure that it's uploaded and changed and updated every time, and when I go into the hospital with then I hand them the notes. It would be so helpful if and I think that that will come when we're professionals. Yes, that they will see us as just, you know, another allied health professional and that will happen.
Nicole 00:22:05 So how did this gentleman find you?
Connie 00:22:08 His wife, his daughter looked me up on the website. I'm the only health care navigator in Vancouver. And I started dealing with his wife about 7 or 8 years ago. And then when she passed away, that I inherited her dad.
Nicole 00:22:26 So are you still the only health care navigator in Vancouver?
Connie 00:22:29 The only one who is advertising?
Nicole 00:22:32 Oh, it seems like there would be incredible demand for the service.
Connie 00:22:36 The demand is massive. It's not a job for a lot of people. I have tried to. I've got five other people on my team now, but none of us do the same thing. So I've got a woman who's who helps support my geriatric clients. She does all of the side work that I don't do. She's really good at taking people to bank, to the bank, or setting up phones and doing all the little, the little things that are needed. I've got somebody who does serious illness conversations. I've got a death doula on my team, but I'm the only healthcare navigator on my team. I've tried hiring retired nurses, and they like a steady paycheck. And when they're retired, they want to set their own hours, which is a totally appropriate. And I don't have I haven't had a proper vacation in 15 years, and they're not willing to do that. And there's not a steady paycheck that's involved either. And so it's even though the demand is high, it's hard to find the right people with the magic sauce.
Nicole 00:23:40 You've written a lot of books and other resources. Tell us about those and how those can be helpful to people that are seeking these services.
Connie 00:23:49 My first book was Advanced Care Planning Ahead for Serious Illness, and that came out in 2020 and it was across Canada. Book and advanced care planning. The ideas are similar from coast to coast. They're the same ideas around the world. But British Columbia is quite different than everybody else. And so it was a very generic book. So in 2023, we published navigating the B.C. Health Care System, which is much more focused on our health care system. So I could talk about our home care system and our long term care system and things like that. Advanced care planning is only a tiny piece of navigating the BC health care system, And I have put. I probably have over 100 blogs on my website that are put together as learning modules. So navigating the BC health care system is one. Advanced care planning is another one health. Increasing your health care literacy is another.
Connie 00:24:49 So I'm constantly adding to that collection.
Greg 00:24:52 Have you found that you received feedback from readers or clients where one of your tools or workshops really helped them move forward with clarity or confidence?
Connie 00:25:03 I would like to say that there are hundreds and hundreds of notes that come back to me saying that it's made a huge difference. I put on advanced care planning workshop for a hiking group yesterday morning, and 20 people reached out to me afterwards and said it was the kick that they needed to get this work done, and they didn't really understand it before that. So that's my juice. That's the thing that keeps me going. It's all those positive feedback.
Nicole 00:25:31 So do people listening who haven't started these conversations, and maybe they feel overwhelmed or they don't know what the first step is. What? What do you recommend to them?
Connie 00:25:42 The first place to start would probably be my website and go to learn and take a look through that. Or they can reach out to me and see where to start.
Nicole 00:25:54 Tell us your website.
Connie 00:25:55 It's thank you.
Connie 00:25:57 It's patient pathways and it's patient pathways with an S and make sure it's okay. Otherwise you'll go to some other one in the United States.
Greg 00:26:09 And how can our listeners learn more about your work and get in touch with you.
Connie 00:26:13 They can go to Patient Pathways.ca, And see the great big green button that says contact us. They can reach out to me that way any time and I'm willing to. I love teaching, I love to do advanced care planning workshops for navigating the BC Health Care system. Workshops I provide one on one counseling for people. I love it when wives bring along their husbands, because that's such a rare thing to have happen. And, yeah, I'm pretty easy to get A hold of. If you just go to the contact us page.
Nicole 00:26:44 So why is it rare for wives to bring along their husbands husband?
Connie 00:26:49 It's not that the wives want the husbands to come, but the husbands are reluctant. I have asked that piece a million times, and I was doing a workshop a couple of months ago, and I said, there's a statistic that says that 100% of us are going to die.
Connie 00:27:06 And two of the gentlemen came up afterwards and they said, yeah, but not to me. And so I've asked that question as deeply as I can. They expect to die before their wives. They don't want to do the work. They don't want to think about dying. They don't want to think about their mortality are the main things. And they think that their wives will just look after it.
Nicole 00:27:28 Sounds about right. Thank you so much. It's been amazing. Connie, and I really appreciate all the wisdom that you shared with our listeners.
Connie 00:27:38 Thank you so much.
Nicole 00:27:39 This podcast is for informational purposes only and should not be considered individual, legal, financial, or tax advice. Make sure to consult the advisor of your choice to advise you on your own circumstances. Thank you for joining us for this episode of Your Estate Matters. If you like this podcast, make sure to follow it on your podcast platform of choice.
Greg 00:28:01 Whether you are planning your own estate or you're acting as executor for somebody else's heritage, trust can help partner with Heritage Trust to protect your family, your assets, and your legacy.
Nicole 00:28:12 If you would like more information about Heritage Trust, please visit our website at Heritage Trust Company.
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