Caregiver Discussion: Advanced Directives Q and A

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Steve Lorberbaum:

… Good morning, and welcome to our first edition of What’s My Plan? So the goal of us at Assisting Hands, is to provide not only great care to our families but also valuable and useful information to help people make the right decisions as they move down the path of caring for their loved ones.

Steve Lorberbaum:

So today, we’re really fortunate because our first topic is going to be advance care planning. And so we have Jane Markley, who’s going to speak to us. She’s a nurse, she’s an expert in advance care planning, and she spends her day advising families about how they can plan for the future, have the difficult conversations, and are ready so that when something happens, no one’s scrambling. There’s a plan and people aren’t racing around trying to get something done. So without further ado, I’d like to introduce Jane Markley, and ask you, tell me what is advance care planning?

Jane Markley:

It’s an opportunity for you to communicate to others what’s important to you, what matters most to you. It includes everything from I want a feeding tube or I don’t want a feeding tube, but it also includes simple things. Like if I’m tucked in at night in my hospital bed, do I like my feet inside the covers or outside the covers? For some people, that’s a really big thing. And if you can’t communicate that to people, there’s no way that they will know what’s important to you. So it’s a full plethora of activities, most important of which is identifying someone who can speak for you when you are in the ER and can’t speak for yourself, or when you are in a doctor’s office or whatever, and cannot express your wishes. It’s important to have them written down and it’s important to have a healthcare agent who knows what you want and can speak for you.

Steve Lorberbaum:

So let me ask you a question because I see this all the time. So we do home care, so we’re going into people’s homes at a time of crisis or we’re talking to families. And the usual thing is I don’t want to have this conversation. My kids don’t want to hear about what’s going to happen when I’m sick, or they’ll know what I want. So how do you even have that opening the bridge to get the conversation started? And who does it? Is it the senior or is it the kids? What are your best ideas on how to get this awkward conversation started?

Jane Markley:

You’re right, it can be a very awkward conversation. In some families, this isn’t awkward to believe it or not. They’ve grown up with… Usually, my multi-generational families are the ones for whom it’s not uncomfortable because they’ve talked about things that might happen, and they’ve lost parents or grandparents or uncles or whatever from different six circumstances. Those people have a much better time and an easier time at going. But many of us in America have never talked about it, and the best…

Jane Markley:

It can be started by anyone in the family. And it doesn’t have to be, what do you want to do when you’re on your death bed? Gosh, that’s definitely not the way to start the conversation. Do you start the conversation by saying what matters most to you? Using an example of someone who has recently been in the hospital or recently died. Gee, how could we have done that better for Uncle Fred? Should we have done something differently? Is a good way to start because it doesn’t start with talking about you, it talks about Uncle Fred. And that gives people a chance to explain what’s important to them and what matters most.

Jane Markley:

I had one friend who does the work that I do, and she had a client that basically told her, “There are three things I want. I’m going to surgery and I have no idea whether I’m coming out,” as I went in or in another situation. But he said “There are three things that are important with me. I don’t care whether I’m in a wheelchair or in a bed. I want to be able to talk intelligently and pleasantly with my grandchildren. I want to be able to articulate with them and be able to keep a relationship going.” He says, “I want to be able to watch my football team on Sunday afternoon and I want to be able to eat my ice cream.” And those were the three important things to that man. That sounds silly in some respects, but it tells you a great deal about that man and what it is that makes his life pleasurable. And those are the kinds of conversations that you can use as a starting point to have the discussion.

Jane Markley:

Another thing to do is to utilize the tools that are out there in the community for you. Things like Five Wishes, the Maryland or your state’s tool for completing an advance directive, and The Conversation Project. I can’t recommend them enough. They have lots of helpful questions that you can ask your family and ways of starting that conversation that maybe even more useful than just what I’ve talked about today.

Steve Lorberbaum:

Would you be able to either send out an email later with a link to the conversation starter? Because we’ll get to the documents and the planning next, but I really want to focus on how do you start this conversation? Because I see so many times… Right now, we’re caring for two families where we have a 90 or 89-year-old parent who is now taking care of their 60-year-old child with disabilities. And one of them, I asked her, “What was your plan?” And she said, “Steve, it’s going to sound embarrassing, but I thought I would live forever. That was my plan. I didn’t think I’d have to worry about this.” And she’s now realizing that wasn’t really a likelihood that she was going to live forever, although she might. She’s 90, she’s in great health. But it just never occurred to her. And she didn’t want to face the difficult situation where she was going to have to ask her other children to be the ones to step up and make sure their sibling was well taken care of.

Steve Lorberbaum:

So again, are there some warning signs that if friends or family members that would give us a sign? Hey, somebody needs to have this conversation or to encourage people to start thinking about planning.

Jane Markley:

Good questions. Everybody needs a plan. That’s the thing. You shouldn’t wait until there’s a crisis or until you’re old or sick or all those types of things. I work with 18, 19, and 20-year-olds who definitely need to have a plan because they’re either they’re graduating from high school, they’re either going off to college or they’re going out into the workforce. Most of them, except in corona times, will be probably going off on their own and they’re be separated from their family in some way, shape, or form. What happens when their friend takes them out on a fast drive and they end up into a tree and you end up in the emergency room? Do you have any idea of what that young adult would want or what that young adult is expecting in terms of their life? Those kinds of questions are important that family members know.

Jane Markley:

The other thing that’s critical for that age group is they no longer are dependents, and therefore, their health records are closed to their parents. Their parents may not even get a phone call if they end up in the emergency room unless they have an advance directive that directs the hospital to contact whoever the healthcare agent is. Having that is a great relief for everyone. Even the kids say, “Well, my mom and dad will just come and take care of things.” Well, number one, they probably can’t take care of things, but they probably won’t even know. So having an advance directive should start early.

Jane Markley:

And then it changes over time. Not that your basic beliefs and values change, but what kind of healthcare you desire may change depending on what kind of medical issues you have, what kind of work-life balance you have, depending on who you grow into as you age.

Steve Lorberbaum:

Okay. So let’s say I drank the Kool-Aid, I recognize I need to get a plan. What are the documents I need? And who has those documents? Who helps me put them together? Is that something you do? Do I have to see a lawyer and spend a lot of money? Are they online? How do I go? What’s the next step? I want to go sign up some docs.

Jane Markley:

Okay, you want to put together an advance directive. First, you need to start the conversation with your family, and using the documents that are out there is a very good way to start. You can go to a lawyer. That’s certainly an option. You can come to me and I can help you through the process, or you can do it on your own. And the only thing I will say with that is you can do it on your own if you will do it. So many people say, “Oh, I’ll just do it on my own,” because there are lots of documents out there. There are lots of forms and tools and helps on the internet. And what I will do for you, Steve, is I will send you, if I haven’t already, I may have already sent you the one-page references page that you can send out to everybody, and that lists some of these sources that I’m talking to. Those references will help move the process along.

Jane Markley:

But what I find is… In fact, I had one client who came to me last year and she said, “You talked to me four years ago, because I went to this course and you told me all about this, you gave me some documents.” And then she said, “They’ve been sitting on my desk for four years. And every time I get down to them, I go, ‘I’m not ready to talk about that.’ And they go to the bottom of the pile.” And she said, “I’ve finally decided I need to take it off the bottom of the pile. I just had a friend who had a horrible accident and was in the hospital, and things didn’t go well because we didn’t know what she wanted. And I want to make sure people know what I want.” So she came and worked with me.

Jane Markley:

It’s the reluctance to move forward that causes a lot of our incompletion of advance directives. Obviously, if you’re going to pay a lawyer and you’re going to go into their office, they’re going to get it done. I give a caveat on that. Some lawyers do a superb job, especially the eldercare lawyers. They do a great job. But some lawyers don’t, because there are specific things that are important to be included in an advance directive and sometimes they fail to cover that. So pick your elder lawyer carefully, or your lawyer carefully is what I would say to that.

Jane Markley:

I do a lot of work with individuals who know they need this and it’s been sitting, like that lady, on the back burner for some time. And all I do with them is give them the process, get them moving forward, and then be their accountability partner. A month’s gone by, “Hey, have you had a chance to talk to your daughter about this?” “Oh no, we put it off.” I said, “Well, now’s the time to do it.” And we keep badgering them just to make sure everybody gets through this because it is an uncomfortable process. And depending on your family.

Steve Lorberbaum:

So what’s the difference? So an advance directive, from what I’m understanding, is that’s the document that goes through and explains how you want to be treated when you can’t advocate for yourself. How does that differ from the MOST form, the Maryland form? And do I need both?

Jane Markley:

The duty question. The duty question. Everyone needs an advance directive, anyone 18 years of age or older. The MOST is not an advance directive. It is a physician’s order and should be based on the advance directive. It is an order that’s written by a physician or a nurse practitioner or a PA based on their conversation with you about the kind of care you would want in a crisis and primarily focuses on CPR for most people because that’s a big crisis that most people will face. And it is required in Maryland for anyone who is in a nursing home, an assisted living center, a rehab center, a transfusion center. Anywhere where care is being rendered, where something might go afoul and quickly, and they need to know what to do if someone were no longer breathing or didn’t have a pulse. So those are institutions where it is mandated in Maryland.

Jane Markley:

It’s also mandated in the hospitals in Maryland for certain populations. Mostly the populations whereby they might be going to one of those facilities after their hospitalization because this gives the EMTs, the people who are doing the transport, written guidance from a physician as to what they should do if something untoward occurs.

Steve Lorberbaum:

Gotcha. Okay. So now let’s say you’re doing it all. You’re in your 80s and you’ve got some health problems, so you have been in and out of hospitals. So you have your advance directive, you have your MOST form, which is based upon the advance directive. What other documents do you need? Do you need powers of attorney? And are there different ones for finance versus medical decisions? And you need those also? Is that part of the advance planning?

Jane Markley:

That is part of advance planning, yes. Advance care planning is basically the advance directives and the MOST. But an advance directive is made up of two things. Your living will, those things you would like or not like in terms of healthcare treatments, and the delineation of your healthcare agent, the person who will speak for you if you can no longer speak for yourself. That is a durable power of attorney for healthcare. So that’s the healthcare piece of it.

Jane Markley:

There is also a durable power of attorney that is done usually in a law office, along with your will and estate plans or whatever you might be doing with a lawyer. That is specifically for financial aspects. The two are different. One is strictly for healthcare, one is strictly for personal property and finance. The same person can hold both roles or not. If you’ve got a bunch of kids and you want to give them all something to do, you give one and one the other. There’s a lot of different strategies on how to make your children feel like they’re participating in your care as you move forward.

Jane Markley:

The one thing you can’t have is a joint decision-making group. In other words, you can’t make your children your healthcare agent. It’s one person. You can make all three children, say, your healthcare agents, but they’re always will be in precedence order. And that bothers some people, but it is probably for your best interest. And certainly the best interest of people making decisions, that you have one person who makes those decisions for you, much like you do with a durable power of attorney for the financial side of it.

Steve Lorberbaum:

And that’s a great thing to point out because we’ve seen situations where both kids have a joint decision-making process for healthcare, and they have different views. Where someone is very sick and one is of the view we need to move to hospice, and the other one’s view is no, we need to do everything humanly possible to save mom or dad. And then they get paralyzed because they can’t make a decision. And then-

Jane Markley:

That’s where it’s extremely important that you know what mom or dad would have wanted because that’s the driver. If mom and dad have said, “Don’t let me linger. I’ve had a good life. Let me go,” then the person who was doing the full-court press is not following their loved one’s wishes. And therefore, they’re negated in the decision-making process.

Steve Lorberbaum:

Right. Okay, so-

Patricia Dubroof:

If I could interrupt for just a second and tell you that you’ve got about eight minutes left, and there may be some questions from viewers. Viewers, if you have a question and you’d like to ask our expert or Steve, feel free to unmute yourself, and we’ll just go in whatever random order you select.

Steve Lorberbaum:

All right. So I’ve got one more for you. So you’ve had the conversation, you’ve got all the documents. And where do you put them? Because I’m in people’s houses all the time and I’ll say, “Do you have advance directives?” “Yes.” “Where are they?” “They’re in our lawyer’s office and we have a copy in our safe deposit box.” So what do you say to that?

Jane Markley:

I say remove them from the safe deposit box. If you are insistent that they go in a box, they should go in your glove box, and that would be a copy. And a copy of the document is as good as the original document, so copies are fine. Whenever you do an advance directive, a copy should be given to everyone you have spoken to about what you want, which should include anyone who might get that middle of the night phone call from the emergency room, whether that’s your next-door neighbor or your daughter or your mother or your sister or whomever. You want to make sure that you have a conversation with all those appropriate people and make sure they have a copy. You also want to make sure that your physician or your healthcare system has a copy. If you’re involved with a faith-based group, they should have a copy.

Jane Markley:

But in Maryland, we have a really, really neat opportunity. And that is the opportunity to upload our advance directive, no matter what kind you’ve done, whether you’ve done a Five Wishes document or a state document or any other document, you can get it uploaded through MyDirectives to Voice Your Choices. And that should be www.voiceyourchoices.com. In there, it will ask you if you want to do an advance directive. And what you do is you click on the green button on the top right and it takes you to MyDirectives. I recommend you do it through Voice Your Choices in order to get it documented so we can keep track of it. Now, you may use MyDirectives as your tool to make your advance directive. It’s not required, however. For example, I used Five Wishes for my updated document, and I went in through Voice Your Choices to MyDirectives and uploaded my document into the system. That allows any hospital in Maryland to be able to access my advance directive at any time.

Steve Lorberbaum:

Wow. That’s a great tip. I didn’t even know that. So that’s fabulous. So if you’re going to have a copy in the home, so where do you put it so that when EMS comes, they know?

Jane Markley:

Yeah. The routine and the standard for that is you always should have it on the refrigerator and available. A plastic-covered list… We talk about being prepared for a crisis. Everybody ought to have on their refrigerator the information that you would want to take, or someone would want to have when you show up in the ER. What medications are you on? What diagnoses do you have? And if you have an advance directive, that should go in there. And definitely, the MOST should go in there and be available.

Jane Markley:

I had a client a few years ago, we’d been working with her and her husband, and her husband had an event and they needed to call 911. And the EMT came rushing in, and as always, two of them come in at the same time. And one went to her husband and the other one went to the refrigerator. She called me and she said, “I didn’t understand. Do you think he was hungry?” And I said, “No. If you remember when we talked, I said that’s where you should have your documents. Were they there?” And she said, “Yeah, they were there and he picked them up. But I forgot about the fact that that was why they were there.” So yeah, they know where to go for it.

Steve Lorberbaum:

So if people want to work with you or to learn more from you, how do they reach you? How do they get in touch with you?

Jane Markley:

It’s really easy. My email address is [email protected]. You can always look MJ Markley up on Google and find my website. You can learn more there. I do a lot of educational programs in the community and with hospitals and healthcare systems to help them understand all of this. It is a moving target in some respects because the MOST is relatively new and still becoming much more familiarized with people. And I’m more than happy to work with individuals or groups to educate and to facilitate the one on one work.

Steve Lorberbaum:

Okay. So Patricia, do we have any questions? Because if not, I have one more for Jane.

Patricia Dubroof:

I’m just letting folks ask. There’s nothing in the chat.

Steve Lorberbaum:

Oh, okay.

Jane Markley:

Well, I think someone did [crosstalk 00:25:26].

Maudo:

I have a question.

Patricia Dubroof:

Here we go. Can you say who you are when you ask the question?

Maudo:

Yes. This is [Maudo 00:25:32] from [inaudible 00:25:33] Assisted Living.

Patricia Dubroof:

Great to have you onboard, Maudo.

Maudo:

Yeah. My question is about Voice Your Choices. Can we upload the will from that website too?

Jane Markley:

You mean your living will?

Maudo:

Yes.

Jane Markley:

Yes. Your advance directive is what you upload, and that includes your living will and your durable power of attorney for healthcare. Yes.

Maudo:

And that’s just for free and I can just fill it out and bring it to their bank or whatever to notarize and to keep it in my files?

Jane Markley:

An advance directive does not need to be notarized.

Maudo:

But the will does, right?

Jane Markley:

A living will does not.

Maudo:

Okay.

Steve Lorberbaum:

So an estate planning will, so a will about who gets your assets, that can’t be uploaded to your choice. That’s a personal private document that you wouldn’t want uploading. And that does require in Maryland a notary and witnesses, but that’s a very separate document. That deals with who gets your assets after you’ve passed away. That’s different than what we’re talking about here.

Maudo:

Oh, okay. Thank you for that specification.

Steve Lorberbaum:

Sure.

Jane Markley:

Someone brought up the File For Life, and that’s the term that’s used in Maryland for that document that’s on your refrigerator. And any fire station can give you the File For Life paperwork that you can have on your refrigerator. I have it online downstairs. It’s just available for the fire department when they come in, and it too is on the refrigerator and available.

Steve Lorberbaum:

So when we do assessments with clients, when we start care with people, we give people that need them a copy of the Five Wishes, which is a document that is very simple, easy to use. Takes you through all the questions that Jane’s been talking about today. And we also give them a File For Life on the refrigerator. So both these things are really important. I say that as a person who, of course, has none of that in my own home. And my advance directive is sitting in a file in my basement, which I’m sure no one will ever find, not even my wife, because she will be in crisis mode when it happens.

Jane Markley:

So you have work ahead of you, Steve, don’t you?

Steve Lorberbaum:

I do, I do. Thank you for reminding me of all of this.

Jane Markley:

Yeah, it’s easy to put it off because we never think that we’re going to have a crisis like that. Even though we’re whizzing by people on the beltway every day, we don’t think that we’re at risk, and we all are at risk. And it’s extremely important to get it out of your file cabinet. Good Lord, don’t ever put it in your lockbox. That’s only opened after you die, which is not going to do a whole lot of good for you in the living sense. And just get off your duff and keep moving.

Steve Lorberbaum:

All right. Well, thank you for joining us today. This has been hugely helpful. I know even I’ve been doing this for years, I picked up several… Oh, we got somebody that’s got a question. So go ahead, Alice.

Jane Markley:

Alice?

Alice:

Hi. Thank you. Thank you for a great topic. It’s something that we don’t really like talking about. But I wanted to find out with this advance directive, let’s say if you fill your advance directive, you put it in the places where it ought to be if an emergency occurs, and other people have copies of it. But let’s say an incident happened and you want to change it at the last minute. You call for 911 and you want to change it. Your change is DNR, and you want to take off that DNR to be to try everything to keep you alive. How do you go about that?

Jane Markley:

Well, to begin with, if we’re talking about me and I have the advance directive and I am alert and awake and calling 911, I can do anything I want with myself while I’m still cogent. The advance directive only goes into effect when you can no longer speak for yourself. And you can always change your advance directive by doing a new document and having it witnessed. But if, for example, I were to have an event and I had a DNR written in a MOST and had that on the refrigerator, and I had an event and I said, “Well, gee, I had a DNR, but I wasn’t expecting to feel this way. I really do want to be cared for.” Then that takes precedent over any paperwork. The problem is most of the time, these people are no longer cogent, and then that’s why they’ve put together a plan. And so the plan needs to be updated periodically. Certainly, if your mind changes.

Alice:

Okay.

Jane Markley:

Does that help?

Alice:

Yes. Yes, indeed. Thank you.

Jane Markley:

You’re welcome.

Patricia Dubroof:

So I also want to mention that our next event with Steve on What’s Your Plan? will be September 11th at 9:30. And we’re going to have Susie Murphy, and she’s the Director of Care Managers at Debra Levy Elder Care Associates. So please look at our website. We have lots of other events every month, and they’re educational and fun, and informative. And I hope this gave you some insight. I know I learned a lot. Thank you so much, Jane.

Jane Markley:

Not a problem. Everybody should listen to Susan Murphy. She’s wonderful.

Steve Lorberbaum:

She is.

Jane Markley:

So make a point to see her. And if I can help anybody, or you have any questions that I didn’t answer and you were timid about asking or think of after the session is over, feel free to email me and let me hear from you.

Steve Lorberbaum:

All right. Well, thanks again. And thanks to everybody for joining us today on our first of many What’s Your Plan?

If you would like to schedule an appointment to discuss your senior loved one’s care needs or to set up a free in-home evaluation with one of our nurses, call us today in MD at (301) 363-2580, or in VA at (703) 556-8983. We are located in Bethesda, MD, (301) 363-2580, and Reston, VA, (703) 556-8983.