EPISODE 14- Advanced Directives in Oregon: What You Need to Know

When it comes to aging well, planning ahead is one of the most loving things you can do—for yourself and your family. In this episode, Jamie Callahan is joined by Angela Franklin, a community educator and death midwife, to demystify Oregon’s Advanced Directive and why it's so important for every adult to have one.

Angela explains what the form does, how it's different from a POLST, and the most common mistakes people make when filling it out.

She covers:

• Why Oregon’s Advanced Directive is unique—and more protective than in many other states
• The difference between an Advanced Directive and a POLST
• When and how to update your directive
• Who should have one (hint: everyone 18 and older!)
• Why having these conversations early brings peace of mind later

Whether you’re planning for your future or supporting a loved one, this episode offers clarity and practical advice.

📞 Questions? Call Team Senior at (541) 295-8230.

Transcript

 Hi, this is Jamie Callahan with the Team Senior Podcast. Our goal is to simplify aging society, grooms us to plan for retirement, but what about life beyond retirement, where the rubber meets the road? Perhaps you've had a stroke or you've been diagnosed with cancer, or maybe you're forgetting things and now you have dementia.

That's our area of expertise and we are here to share our insight. And now the Team Senior podcast. Hello everyone, it's Jamie Callahan and I am in the studio today with Angela Franklin. Angela plays many roles in southern Oregon, and if you have ever met her, you know that she is one of those that is bending over backwards.

Every day assisting folks that are aging in many different ways. Today we're here to talk about how she assists folks with advanced directives. So Angela, can you tell us a little bit about your background and how you got involved and who you are? 

So I started out as a person who was a very grassroots educator and community organizer and, started to create workshops around different topics that I felt were not being offered out in certain communities. And and I had a experience where my mother died and I became her caregiver. And that introduced me in being a community death midwife. And through that opened me up to advanced care planning.

I think before that I never really understood that even existed until it was something that, was needed in different situations in my community. And so I started working at the community level and then about five years after I started doing that work out in the community, I became an older adult behavioral health specialist and was able to bring my passion of advanced care planning into that work.

I love that. What is your education? 

So my background is in sociology. And beyond that it is a lot of life experience and being a community involved person. 

I. I love it. Okay, so for those maybe that are unfamiliar with what an advanced directive is, 'cause it's not the pulse and sometimes there's some confusion there.

Why is it, what is it and why is it so important for someone to have an advanced directive? Yeah, so an advanced directive is a tool that is used for advanced care planning. So advance care planning is the overarching, process of getting someone's wishes, documented, the conversations having someone do the.

Exploration work needed and understanding like what are the things in our lives that have happened that have shaped the way we look at serious illness and end of life and even death itself. And so an advanced directive is a legal document that. Is created so that a person can let a healthcare provider know what are the things that they would want if they're not able to communicate themselves.

And so in Oregon, that looks a couple of things. So an advanced directive has three main parts. When I think about it, it has what we, where we appoint someone who can be our substitute decision maker if we can't communicate ourselves, 

assuming that person doesn't have capacity to talk, maybe they're in a coma.

Yeah. 

Okay. 

Or if they have been legally, deemed not having capacity. So someone who may not have, who may be experiencing cognitive impairments like dementia. Like dementia. Okay. Yeah. So there's a number of reasons why someone might not be able to communicate. So the second part is it gives us different scenarios of not being able to communicate.

And so we have if you have a terminal illness, if you are unconscious and then also if you have a progressive illness. And so that is something like dementia. Okay. Or a LS Parkinson's, different things that may, yeah, progress. And then the very last part of it is what we would call a living will.

And so a living will is where you can lay out what makes you. What your values, what your preferences for like care settings. And our organ advance directive has a lot of really good open-ended questions so that you have the ability to write that down. 

I love that. So would that be like, maybe.

Peace on religion or peace on whether you want to go through end of life in the hospital versus at home. Give us some examples of what that would be. 

Yeah the care setting. So if you would like to be more at home or in a hospital like you said. Also, what are your cultural and spiritual beliefs?

So that those things could be honored if you're not able to communicate them. And then even different areas for folks different considerations like LGBTQ plus. Identifying folks you might want to add other specific considerations around chosen family and the type of people that you want to be surrounded with or friends.

Friends, all of those things. Yeah, I love that. And then we also have a really great section where you can add other. Documents. And so that's where our like dementia directive comes in, where we can add an addendum to address those things as well. So 

get really getting into the details then. Yeah.

Yeah. That's great. I know that there are lots of different versions of advanced directives as we look at the entire country. What makes organs advanced directive unique compared to other states? 

I think ours is not just a checklist. So the fact that we have the living will aspect that makes it unique.

And I think that's the main one. Some states have some additions. So like California, you can actually appoint someone to do your funeral arrangements in your advanced directive. 

But you could probably do that in Oregon too, in the form of an addendum. 

No, not necessarily. No. Okay.

Yeah. We have different forms for that, but 

so if someone hasn't filled out the form for the funeral, then what 

that's a, an another huge topic. Okay. 

But maybe a topic for another podcast. I've actually had this conversation with several funeral directors, so I know this is really complicated.

Yeah. Okay, so one thing I wanna note is when Angela said, it's not just a checklist and you get to give more specifics. So some advanced directives allow you to just say the types of life sustaining treatments you want, but it's not really taking a deeper dive into the cultural aspect or the religious aspect.

Or what friends and family do you want there? And quite honestly, what friends and family maybe you don't want there. So that is a way that, Oregon's advanced directive sets it itself apart. I know that the advanced directive in our state has evolved over the last few years. What has that evolution looked like?

Yeah. We get a new advance directive every five years. We have a advisory council that reviews and makes different additions. It has evolved by adding, those open-ended questions. It's also evolved in. The, just the way that it's presented, if you go to the Oregon Health Authority website, we have I think there's 20 different languages that the advanced directive is in and it has guides to going through the advanced directive in all of those different languages.

That's amazing. 

Yeah. 

That's really amazing. So quickly the, we're gonna divert from, some things that we had agreed to talk about, but I wanna just bring to light a case that happened, and I think it was a case that happened here in southern Oregon, and you're probably familiar with it, which I'm sure has contributed to why some changes have transpired in the current advanced directive that's here in Oregon.

There was a case where the individual had indicated in their own advanced directive that they didn't want any kinds of life. Sustaining treatments and had been able to say, no IV hydration, no tube feeding, no all of these things, but the person's life was being prolonged because the care setting that this person was in was giving them hydration through the form of ice cubes dissolving in their mouth.

Which is very common in end of life. This is something that we do for folks that want to have that. There was a lot of controversy in this case because there were family members that were involved, very close family members, so we're talking like children that didn't agree, spouses that didn't agree. And then this actually went to court.

It was a massive battle to allow this person to pass away with their wishes. Can you speak to that case a little bit? What you've found, with. Things like that, 

I'm actually not familiar with that case. I'd love to learn more about that. 

Oh my gosh, I will definitely get you connected.

Yeah. So Dr. John Forsyth was consulted on this case and he has historically, he's a retired cardiologist who you probably know. He has been looked at as an expert around. End of life and advanced directives in the state of Oregon for a very long time. So we know that he's consulted the ags office, the long-term care ombudsman, various other very big officials around, how to interpret what's in someone's advanced directive.

I feel like that's lent itself to the evolution of the advanced directive here in Southern Oregon. Things are added probably for protections for people that identify, this is what I want in this. Is what I don't want. Which then essentially forces the hand of people to honor what that person really wants.

Yeah. Yeah. And that definitely. Is one of the benefits of having an advanced directive is it provides guidelines for family members, that are not necessarily in agreeance with how they would like to see things go forward and, so now that we know that I'm assuming that through this case they are more likely to follow the advanced directive and not have it be overrided by family members, 

right?

Yeah. And then, taking away the interpretation, right? I think in literally anything you do in life, right? You can try to spell it all out, but you're always gonna find a loophole or gray area or something, I think as the advanced directive. Evolves here in Oregon, we're really trying to take out some of that subjectivity and make it more clear for family members that are very emotionally vested in not seeing mom pass away.

So maybe somebody's trying to do everything they possibly can to prolong the process where that's maybe not her wishes. When we talk about who should have an advanced directive, I make a presentation, around the state, and I talk very briefly about advanced directives, but I always say everybody should have one.

Talk to us about, your perspective. How do you educate people on who should have an advanced directive? 

Yeah, I'm with you. I think everyone should. You can, as soon as you turn 18, you can do an advanced directive. And I think that sometimes. We are a death avoidant culture, and so we don't even think that this is something that we need to look at until we're older.

So not only death avoidant, but we're ageist. Sure. And yeah. I think that any time someone has a life changing diagnosis. That is definitely a time to start thinking about how to be able to advocate and kind of plan for your future care. So if. If you are not willing to do it at any age, younger on, then at least when you have a life changing diagnosis.

So it does not have to be a terminal diagnosis but just one that's gonna be Yeah. Kind of life changing. 

Yeah, and a great example of, why you would wanna do this at any age is let's say you're 22 years old and you get into a car accident and suddenly you don't have capacity to make.

Decisions for yourself, but you feel profoundly committed to never having a certain kind of life sustaining treatment. Guess what? You're probably gonna get everything if you don't have an advanced directive in place. 'cause your whole family's gonna be there advocating for every single opportunity to save your life.

And rightfully right? I would do the same thing for my family. I would certainly honor the wishes in someone's advanced directive though. So let's talk for a minute about okay, so you've put everything in this advanced directive but we have those gray areas. We have those places where we did maybe didn't address this thing.

The advanced directive allows you to name a healthcare representative. What do you recommend to somebody in terms of who they should consider when choosing that person? I. 

You definitely want to choose someone who is willing to talk to you about these things and have the conversations around it, someone who is able to be an advocate.

Because the times when these are being utilized are typically times that a lot of things are going on. Sometimes when people are, really emotional about what's happening with a person, that can cloud their ability to make these decisions. So when people automatically think about their their spouse or their a family member and they think that's who they should be asking to do this, it's not necessarily maybe the best choice for that.

So like for myself. I'm thinking, who is the most outspoken, stubborn person in my life? Who has the ability to advocate that will defend your wishes? Yeah. Yes. Yeah. And it also, when you designate someone who. Is having the conversations with you also, including your loved ones, into those conversations, if they're not going to be your decision makers.

That can allow your family to actually be there for you and not to have to, be actively grieving what's going on and like in the acute crisis. Sure. So much stress comes 

with being the decision maker, right? Yeah. Are we pulling the plug or are we not pulling the plug?

That's very stressful if I don't have to be that person. 'cause I don't even get the opportunity to be that person. That's a massive stress load off of me. 

Yeah. And it needs to be someone who's going to honor your wishes and your preferences, even if they do not agree with you. 

Yeah, I see that, and I totally understand that.

What happens in Oregon if someone becomes incapacitated and they do not have an advanced directive in place. 

Then all of the decision making goes onto the healthcare providers and they're going to try to. Decipher what they can about a person through, different people that come in.

But most of the time it's gonna be what they see in your medical records and it's gonna be based on their medical opinion. So oftentimes it will. Leave out any sort of personal beliefs in cultural or spiritual aspects. And it could be based on assumptions. 

Could it also defer, just in brief to the pulse?

So you have, you're in the hospital, you have an incident, you have a pulse that, that identifies you as a do not resuscitate. Would they resuscitate you in that scenario? 

No, but not everyone has a pulse. Understood. So if you have a pulse, which I guess we should say yes, we should talk about what that is.

Yeah, so POLST is the portable orders for life sustaining treatment. It's a medical order, so it's the only thing that takes what you know is in your advanced directive and makes it a medical order. And it is. Do you want to be have CPR attempted or not, is like the first question in a pulse.

And then right after that is do you want full intervention, treatment selective or discomfort measures? And the pulse is only. Going to be filled out if someone has a terminal illness. If they have advanced frailty they have a condition where the likelihood of them stopping breathing or their heart stopping is gonna happen.

So it is not, not every doctor is gonna sign off on that. 

Gotcha. And 

yeah, it's our, the DNR that everyone talks about is hospital and incident specific. So if you go to the hospital, you can sign a DNR, do not resuscitate. But as soon as you get discharged, it goes away.

And then if you go to another. Hospital you would have to do another or the paramedics come to your house. You can only do DNR. It's only okay at the hospital. And they created the pulse as a way to be able to utilize that and go in different settings across the state. So that's why it's called Portable Orders for Life Sustaining.

So that's an area where I just got educated. Yeah. Because I've historically always called it the physician's Order of Life sustaining treatment, which I suppose it is, but makes it's both it portable. Yeah. What's important to know about the pulses is that it typically is that bright pink piece of paper.

Every person that works in long-term care and healthcare will recommend that you keep it on your refrigerator. So that should the paramedics show up there, they know exactly where to go to get it. I always like to stop when we're talking about the pulse though, and highly recommend that you make.

Some copies and keep it behind your original hot pink piece of paper because when the paramedics come in, they're gonna take that and I can tell you from experience, you're never gonna get it back. You're gonna have to get another one from your primary care. So if you can keep some copies behind it, it's a really good idea.

'cause they can take that copy instead of your original. 

Yeah. And the, and this, so the pulse is something that a doctor or a medical provider has to sign on. So it is not something that gets notarized or witnessed like the advanced directive. So naturopaths, nurse practitioners physician assistants and MDs are the ones that can sign a pulse.

And at times some doctors have stated. That if you're 65 or up, you should have a pulse. But that's not actually what, why the pulse was created. And it states pretty clearly on the training for providers that this is not just 65 and up. 'cause we have a lot of really healthy, older adults that don't necessarily need that pulses.

I always use the example when we're talking about the POLST too. Be very careful about what you. Put on there because, and the example that was presented to me actually by Dr. John Forsyth in a presentation was that if you are reasonably healthy and you have a pulse, which now I understand you probably shouldn't have a pulse, but let's say you do and you're reasonably healthy otherwise, and you have indicated that you do you as a DNR, because in your mind you're thinking, I don't wanna be in the hospital.

Married to all of these different types of life sustaining treatments with my family standing around, dwelling over what's happening. I just wanna be a DNR. But the example that John Forsyth used was, if I am in the kitchen and I mistakenly get electrocuted. And I have the opportunity to be resuscitated 'cause I have no heart troubles.

Otherwise, you obviously want to be resuscitated in that scenario. So it's, I only share that to say, be cautious about indicating that you, do you wanna be a DNR until you're really ready to be a DNR. 

And the other thing is we need to make informed decisions and we do not inform people about CPR.

We don't inform people about the success rate of CPR and what exactly. That means when you get CPR, what are the differences of receiving it in the hospital versus receiving it out in the community? We really, truly need to have, that information available to us because the success rate of CPR is a lot lower than what people think.

And as we get older and we have different, illnesses, it's gonna, I. It's gonna look different. Sure. 

Absolutely. Especially success in hospital versus out of hospital. Yeah. So you mentioned earlier that the pulses does not need to be notarized, but it is something that has to be created by your doctor and signed by your doctor.

Let's talk about the advanced directive. In terms of it being notarized. Is it necessary that it's notarized or witnessed? 

Absolutely. So it has to be either. Notarized. And what needs to be notarized is the person signing the advanced directive. Or witnessed by two people signing the advanced directive.

Now, one of the things that actually I did not mention about what makes ours unique versus other states, the advanced directive, is that when we appoint a decision maker. They have to sign and accept that role. Almost every other state does not have that. Interesting. So that is also really important because in other states, people can assign someone to be their decision maker, 

who doesn't wanna be the decision maker, who's never 

had a conversation.

Interesting who didn't even know that person put them down. So those signatures of the decision makers do not have to be witnessed. It's only the person signing the document that does. And the other thing to remember is more and more people are. Becoming solo ars. So they don't necessarily have a lot of supports around them.

Maybe a lot of their family has already died or lives far away, or is estranged from people. And so you can have advanced directive and not appoint a decision maker, but you still have a voice that's voice. That's really a voice important to note. Yeah. And so when I do workshops. And people have everything planned, and they're like, okay, now I just have to find someone to be my decision maker.

I'm like, go ahead and submit this into the medical system. So you can like rest easy that if you, something happens, the milk providers are gonna have these guidelines and then add the decision maker. 

Got it. 

Yeah. And they're supposed to honor what is written there. So at least you know you have that.

Got it. So we know the pulse is recorded in medical records. You mentioned something about recording advanced directives. Is the advanced directive also recorded, and if so, where? So we have a state registry for the polst. Once your doctor signs off, they submit it to the registry and then paramedics can access that registry to see whether or not someone has a pulse.

And the advanced directive, we do not have a registry. So it's really important that once it gets completed, that you have to do the work to actually hand off a copy of it to your primary care provider. And it's also important as if there's two places and you don't give it to anyone else, is if.

You were at home or out in the community and the ambulance had to take you to a hospital, what hospital is the ambulance gonna take you to? That hospital needs to have your advance directive submitted to their medical records, and you can do that by mailing it to them and just having little cover letter that says to, add this to my medical records, this is my date of birth.

And send them the copy of it or walk it up to the medical records. That's 

great advice. 

And then the second one is, if I was life-flighted. Somewhere is that a different hospital system? Like in southern Oregon it might be Asante for, an ambulance, but maybe we might be life-flighted to like providence.

And hospital systems, we wish that they all communicated with each other, but they don't necessarily have quick access, to records. So we just wanna submit to all of the different. Hospital systems. 

That's excellent advice. So Angela, we've actually run out of time today. But as you can tell from her time that she's been here so far she truly is an expert around advanced care planning, advanced directives, all the things.

She's very accessible as well. So share with us how folks would contact you if they wanted to do that. 

Yeah the easiest way would be to contact me through Journey Home Support Services where I do a lot of one-on-one advanced care planning sessions with people and then. I'm sure in the show notes maybe you'll have a link to that.

But then also as an older adult behavioral health specialist I am providing community workshops throughout all of Southern Oregon. We have ones at the Senior Resource Center in Grants Pass. We're working on providing this monthly through Asante at various locations. Yeah, to find out about those things.

Go to Team Senior and hopefully you guys will have all of that posted. We are definitely, so we definitely know how to reach out to Angela. Yeah. We are one of her biggest fans. And like I said, she's a tremendous resource. So you've all heard me say this many times. If you need to get in touch with anybody that you've heard on our podcast or you have literally any questions about.

Anything in the long-term care spectrum, we are wildly accessible. Just call us. We are the company, as I always say, that will answer the phone on Christmas morning. If ever you get our voicemail, please leave a message. We will call you back same day, sometimes immediately. And Angela, I just wanna say thank you again for coming today.

You could get in touch with us or Angela any time around, any questions about what we discussed today, and I wanna say thank you. So much to every single person that is following us on this podcast. Have a wonderful day. Thank you for listening to the Team Senior podcast. We're here every week sharing new and relevant information.

Remember that we're just a phone call away. Team Senior can be reached at 5 4 1 2 9 5 8 2 3 0. Again, 5 4 1 2 9 5 82 30. Until next time, this is Jamie Callahan.