Communicating Your Wishes: Letting Others Know What Matters Most To You

Bri (00:00):

Hi, Mary Beth, I am excited for us to get to sit down together again today. You know, we’re gonna talk about some things that are really important when it comes to personal healthcare. So important though, that it’s oftentimes avoided because of how serious and, you know, overwhelmingly serious it can feel sometimes just how important.

Mary Beth (00:26):

I think it’s really important as a gift to the people who might be making decisions for you. It’s a gift, but also to have control of our healthcare for as long as we can through letting others know what we want, what matters now.

Bri (00:42):

So it’s time sensitive to say the least.

Mary Beth (00:44):

True.

Bri (00:45):

So in another episode, we talked about what matters most to a chronic kidney, a disease patient, and a big part of that is advanced care planning. So you mentioned how 10 to 15 years ago that looked like just a single document and how over the years a healthcare community, but DNA in particular has decided that there really needs to be more in order to really honor what’s most what matters most to, to patients when you that’s, when you introduce the supportive care team that DNA has. So if you’re listening right now and you wanna learn more about DNA supportive care team, the differences between advanced care planning and palliative care and what shared decision making means, be sure to check out an episode titled what matters most, but for those tuning in today, Mary Beth and I are actually gonna go into the documentation in aspects of advanced care planning in particular and advanced directive. Correct. So go ahead and pause the episode. So you can Google prepare for your care.com and pull up a form along with us and get it done. You said it’s important, right?

Mary Beth (02:00):

It’s very important. No matter what our age is as over 18, if we don’t have this in place, then someone will be guessing what we would like for our healthcare.

Bri (02:10):

Well, and prepare for your care.com is one resource to find this document that we’re gonna go through today. Are there other options as well?

Mary Beth (02:18):

Yes, but I’d first like to say, prepare for your care is state specific. So it has been in research for over 13 years and legalities have been reviewed with the prepare for your care per state. So I, I like that it’s in 11 languages, but also the conversation starter guide is very helpful. I think for people, each one ask a little bit of different angles on questions. When I was doing the conversation starter guide, one of the questions was about what would you like to do if you knew that you only had so much time left? I had to think about that with tears in my heart. You know? And I thought I would like to have my daughter come sit in the bed and watch Westing with me. Yes. So, I mean, each one has different angles. Another one is specific to kidney patients and it’s a guide for people with chronic kidney disease, which can be found at the coalition for supportive care for kidney patients, website. Cool.

Bri (03:18):

Coalition for supportive care. Okay, fantastic. So we’re gonna walk through the form here today, but should we first start with what is an advanced directive and how does that really fit into advanced care planning?

Mary Beth (03:34):

Absolutely. One of the reasons why I like prepare for your care.com because it’s inclusive of all the things that I think are important. One of the advanced directive possibilities is a medical power of attorney, which allows you to name people who would speak on your behalf, who are not able to about medical decisions. Another is a living will prepare for your care document, allows you to name the decision maker and also talk about what matters most to

Bri (04:02):

You. Fantastic. So let’s get into it. I’m gonna pull up the document here on my side. I know you have some of it in front of you as well. I do. You’re immediately greeted with talking about this form has three parts. So what is, what are we gonna first get into here?

Mary Beth (04:19):

One of the most important parts as we talked about is making the decision of who will speak on your behalf. And that’s not something that comes easily for some people, many people feel that they don’t have anyone that they would trust to follow their decisions. And in that case, it’s even more important to get something documented. . So then we’re gonna talk about what matters most in certain situations. And again, advise people to update this at least every two years. Okay. And maybe more often, if you’re in the middle of a chronic illness or, you know, a acute illness and then letting others know your wishes, including your doctors

Bri (05:01):

And being able to have a place where this form is known, where it’s found, I’m sure we’ll get into what to do with this form. Yes. afterwards now let me forget. Yes, exactly. We’ll make sure to go into that. So what should we do with this form? It looks like that’s one of the first places to start.

Mary Beth (05:20):

Well, normally we allow the patient to have the original doesn’t have to be that they have the original, we make copies for the people they’ve named as their medical decision makers. We scan it into the chart, but really, and truly, we want to give our advanced directive to all of the doctors that provide care for us.

Bri (05:40):

Okay.

Mary Beth (05:41):

Including when to go to the hospital for something.

Bri (05:43):

Perfect. And so what is a good decision maker? You know, look like?

Mary Beth (05:49):

Well, it can be a number of people. Someone over 18 is very important. It does not have to be a family member. It can be a trusted friend. One of mine is a friend that I’ve known since the late seventies. The first one is my husband. The second one is my daughter. So it can be any number of people that you feel comfortable would honor. What’s written down if they need to speak on your own behalf.

Bri (06:16):

And so what will happen if you do not choose a medical provider, you know, or excuse me, a medical decision maker?

Mary Beth (06:22):

Most of the states have an order of progression in terms of relationships, spouse, mother, father, children, as to how that will be followed, but sometimes it can go to a court to decide. And I don’t think really any of us want that. Right?

Bri (06:40):

That would be our last stop there. And so what type of decisions can this, you know, decision maker make?

Mary Beth (06:49):

Well, there’s flexibility noted in the prepare for your care document, which is another reason that I like it. Okay. You can specify whether the decision maker has total flexibility, some flexibility or no flexibility, and you can also specify if there’s an area that you absolutely want them to have no flexibility. But they can have flexibility in other areas.

Bri (07:13):

Okay, perfect. And so if we’re getting into actually where we’re gonna be signing the so it looks like I would need to select here, when can my medical decision maker make decisions for me,

Mary Beth (07:25):

Whether that’s immediately upon signing the form or only if you are in a situation where you cannot make medical decisions for yourself.

Bri (07:34):

For me, I’m gonna say only after I’m not able to make my own decision.

Mary Beth (07:39):

I’m gonna check a few of these spots for you so that you can have that. And would you also like to think about who your decision makers might be?

Bri (07:49):

Yes. So, you know, my first decision maker would be my mom, The mare And the, the second person, you know, I, I do like there’s that backup, you know, option if you’re not able to reach one person depending on how things are time sensitive.

Mary Beth (08:05):

Or if you’re in a car accident together.

Bri (08:07):

Oh goodness, God bless us.

Bri (08:09):

I’m gonna knock on wood right now. My second person would be my close personal friend.

Mary Beth (08:16):

Okay.

Bri (08:16):

Absolutely. All right. I’d trust her with my life.

Mary Beth (08:19):

Good choices. And at that point, would you want them to have any flexibility to have no flexibility or to have total flexibility?

Bri (08:31):

And so what does flexibility, what can that look like?

Mary Beth (08:34):

Well, flexibility can be that they don’t follow your wishes because they might think you haven’t made good decisions. Flexibility. Some flexibility would mean that they could talk to the doctors. And if the doctors advise X, Y, or Z, then you give them that permission to do that.

Bri (08:53):

So does it, you know, is this something that you’ve encountered when it comes to family or loved ones who have said, I wish. I can imagine at that point in my mind, I’m thinking flexibility, right? Take some advice from healthcare professionals and then make a decision. However, I’m wondering what your perspective has been from past experiences of folks who said I’d wish they’d just made this decision clear.

Mary Beth (09:14):

Right? Well, for me personally, I’ve certainly put some flexibility and most people do choose that option, that people who are in advanced stage of disease, who are very sure that they do not want any wavering. They know exactly what they want. They will choose no flexibility.

Bri (09:31):

My inclination is flexibility. Okay. I’ll select that for today.

Mary Beth (09:36):

Just as a general thought, how do you usually prefer to make medical decisions entirely on your own with input from others? Or would you prefer others to make the decisions for you generally?

Bri (09:49):

You know, I would make them for myself.

Bri (09:52):

You know, an only child.

Mary Beth (09:54):

You’re independent in that way. Yes, exactly.

Bri (09:57):

Exactly.

Mary Beth (09:58):

And then may I ask what matters most, some of the areas that are important for us to know like a friend of mine had advanced cancer and it was very important for her to get home so she could have her puppy with her.

Bri (10:14):

Yes.

Mary Beth (10:14):

You know, when she died. And so what’s important family and friends, pets, working, volunteering, not being a burden on your family, religions, spirituality, any of those that you would wanna know.

Bri (10:28):

There’s, you know, there’s absolutely, those are things. This is that part where you start thinking about what do I want to be? I think, you know, comfort, you know, would absolutely be important in terms of being able to be offsite or like your friend mentioned being able to be at home.

Bri (10:45):

Okay. You know, I can imagine myself on a camping trip honestly.

Bri (10:50):

And able to be there. I would say comfort and you know, around friends and family.

Mary Beth (10:56):

Okay.

Bri (10:57):

What else did you mention?

Mary Beth (10:59):

Pets are caring for yourself and being independent?

Bri (11:04):

I would say being able to care for myself, however, there’s got to be a line of I’m sure anybody can decide on at what point you need assistance and need others to make a decision for you.

Mary Beth (11:22):

So that’s important, but we’ll talk a little bit more about that. Is that okay?

Bri (11:29):

Absolutely.

Mary Beth (11:31):

In your current state of health, what would be more important living as long as possible? Somewhere in, in the middle are having quality of life and comfort.

Bri (11:44):

I’m gonna say somewhere in the middle.

Mary Beth (11:46):

Okay.

Bri (11:47):

I mean, I can imagine that those are situations where you decide, you know, just how long, you know, things are just how hopeful you may be. I would say in the middle.

Mary Beth (11:57):

I’m gonna put down the idea of hope. Yes. Because that sounds important for you.

Bri (12:01):

I like that. I’m curious of in this moment in time, you know, if there’s something that, that you recommend, you know, just based on experience and years in this industry.

Mary Beth (12:11):

Well, you know, the most important thing is what matters most to each of us.

Bri (12:15):

This is a good point.

Mary Beth (12:17):

And it’s different for each of us. You know, now the next question is perhaps a little tougher, I would say at the end of life, if you knew you had a terminal illness, what would be more important in that situation? Length of life, quality of life, somewhere in the middle, what would be the most important?

Bri (12:36):

I would say comfort and quality of life.

Mary Beth (12:38):

Okay. And that’s often what many people choose, but again, it’s, what’s specific to their background.

Bri (12:45):

That’s still somewhat of an intangible in the sense of what is comfort and what is quality of life, just how granular or, you know, is that something we get into more or like, do you ever have to really line that out at some point? Or is it up to determination at the moment?

Mary Beth (13:04):

Well, we try and for people that we know in our, in our practice that are chronically ill, as we see a decline in their condition, we would wanna revisit this. Sometimes it’s weekly with patients. Sometimes it’s more than, you know, once a week, depending on the decline of their illness. But the next part that we’re gonna discuss, I think we’ll get into a little bit of that granularity. Okay. So at the end of life, which of these things would be very hard on quality of life. Now these are tough questions. They’re important questions for others to know, but being in a coma and not able to wake up or talk to your family and friends, would that be hard on your quality of life?

Bri (13:51):

Yes. However, I’m on like, is it a, you know, a two day coma versus a six to eight month coma.

Mary Beth (14:03):

And I’m gonna just take a moment to do that, then what about not being able to live without being hooked up to machines.

Bri (14:12):

Without being hooked up to machines? I would say that’s, you know, something I would like to avoid or if we’re checking it, that means?

Mary Beth (14:23):

That means that that would be hard on your quality of life. Okay. And in the next section, I’m gonna ask a little bit about whether you would be interested in a trial of life support, staying on life support as long as possible so that we kind of get into that granularity.

Bri (14:41):

Gotcha.

Bri (14:43):

So I would say that would be hard the next one of not being able to think for myself such as dementia.

Mary Beth (14:51):

That would be hard.

Bri (14:52):

I mean all of these would definitely be difficult.

Bri (14:56):

Outside of you know, the, I would say outside of having constant, severe pain or discomfort, you would be for a certain amount of time. That’s not necessarily a problem.

Mary Beth (15:06):

But not being able to bathe yourself and take care of yourself, living in a nursing home would not be things that you would necessarily want. Those would be hard on your quality of life. Okay. And you’ve already mentioned that it would be important to die at home if possible. And to be honest, I had a cousin who wanted to go to Galveston because that’s where her family went often. So her family was able to get her to Galveston for the time and place of her death. Camping is a possibility if that is really something you desire.

Bri (15:39):

I’ll just be being out in nature is absolutely what adds to my quality of life today. So I would like to see that, see that through.

Mary Beth (15:47):

One of the special things that I remember from my cousin is that her husband, out to the beach, to the water. Oh my goodness. So that she could really feel like she was there. So that was very special. I think those things are very important. Absolutely. Whatever matters most to us. And so here we are about trying all life support treatments, do a trial of life support, or you do not want any life support treatment?

Bri (16:10):

A trial.

Mary Beth (16:11):

A trial okay.

Bri (16:12):

Of where we’re at today, at least.

Mary Beth (16:18):

You should be writing these every couple of years. Is there anything else that you would want your medical providers or decision maker to know about this particular choice?

Bri (16:27):

About?

Mary Beth (16:28):

Trial of life support?

Bri (16:30):

If it were to exceed three months.

Mary Beth (16:35):

Let’s talk about it again. Maybe if it’s gonna exceed more than three months, I’d like everyone to powwow. That kind of thing.

Bri (16:41):

I like that.

Mary Beth (16:42):

And then are there any spiritual or religious wishes that you might want noted sometimes for Catholics? Anointing of the sick is important sometimes for the people who are Jewish, you know, a special advanced directive is created for them. Is there anything like that that would be important for you?

New Speaker (17:01):

That would be definitely something to, to revisit, but nothing comes to mind at the moment.

Mary Beth (17:05):

And then, is there anything else that you would want your decision makers or your medical providers to know that maybe we haven’t covered?

Bri (17:16):

Ooh, that’s a tough one.

Mary Beth (17:18):

And again, you know, Brie, we don’t have to answer every question for you or anyone. Sometimes I just put a line through it and let them know they can change it tomorrow if they want.

Bri (17:28):

That’s where my mind is going right now, but you know, I think it’s important. Is there anything else that you would say, you know, in this sec for, for those who may be listening and trying to decide. What if they’re doing this on their own, what to put in this space?

Mary Beth (17:42):

That is an excellent point. Two things to your, to your question one. We, we like to know from people in this form notes that also, if you would like to know as much about your illness as there is to know, or if you would prefer to only have big picture. So you can think about that if you want.

Bri (18:03):

Oh no. If that’s, if that’s something to include here, you know, that’s a good one. I think I, I think I’m gonna lean towards big picture, big picture.

Mary Beth (18:14):

You don’t wanna know the details and everything to encourage your decision making.

Bri (18:21):

No, I think that’s a great idea.

Mary Beth (18:22):

Something for you to think about.

Bri (18:24):

You know, I think I’m gonna change my mind. I think everybody, you know, I think maybe picture, however, I think, you know, I would probably say details in that moment to be able to make sure, like you said, make sure you’re informing your decision.

Mary Beth (18:38):

Absolutely. And one of the things that I realized from personal and professional experiences, sometimes when we hear news that we’re not expecting, we don’t really hear it.

Bri (18:48):

Oh , absolutely.

Mary Beth (18:49):

You know, so we have to hear it a few times.

Bri (18:54):

Repetition at that point.

Mary Beth (18:56):

Right.

Bri (18:57):

To understand where you’re at. Right. Absolutely. And so where does that leave us? You know, in terms of the form.

Mary Beth (19:08):

We’re really done?

Bri (19:09):

No way.

Mary Beth (19:10):

Well we do need your signature. And in most of the forms, I think that look like this advanced directives that are patient facing, so to speak because we’re all patients at one point or another, you can sign it in Texas in front of two witnesses. Who are witnessing your S or a notary and then the notary can do it. The people that you ask to witness your signature cannot be like, in your case, your mom or your friend. The other thing I wanted to note about this particular form is that on the website there is a way that you can have a little family meeting and there’s a video available to guide the family in this discussion because it is a hard discussion. You can do it on your own. You don’t need a person like me. You can put it into the computer where you actually can save it and change it over time with a new date, print it out, you know, and get it witnessed or notarized. But there are all kind of ways to do this particular document.

Bri (20:19):

I think that’s so important that you mentioned that a, the fact that you would need it witnessed by two people who are not, those might be the two that you’re happen to B by while you’re filling it out. So it’s important to note that you can pull strangers off the street.

Bri (20:32):

Other than that, some of the details about organ donors and things like that. Is that something that ends up?

Mary Beth (20:45):

We do ask that sometimes about whether a person wants to be an organ donor and whether or not they want an autopsy. Do you have thoughts that you would like to include?

Bri (20:54):

I would absolutely love to be able to be an organ donor. Okay. If they’ll accept me.

Mary Beth (21:00):

Well, there’s always things that can be accepted for, you know, skin a corn. There’s always things besides our organs, in addition to our organs. And what about an autopsy? Some people would want it only if it’s needed. Some people want it regardless and people absolutely don’t want it.

Bri (21:19):

You know, I would say I would want one if there it was needed.

Mary Beth (21:22):

Okay.

Bri (21:24):

Or if there was, I would say if there was confusion. Okay.

Mary Beth (21:27):

All right. Now, do you have any questions that have kind of popped to mind since we’ve been kind of completing this document?

Bri (21:34):

You know, I think it just, it’s not necessarily questions so much about the form. It’s just, it, it starts ask, get, you’re asking yourself questions. And you’re in a place where you start to think about that. And you know, you said, this is a gift to, those in your life. And so I think, you know, being able to look at it through that lens makes questions like this much harder, you know, when you’re looking at it.

Mary Beth (22:00):

Right. Sometimes, you know, we, we all wait too late. Not you or I, because we’ve done this now I’ve done it several times. But sometimes there are family members patients who wait until they’re confused, there’s maybe some aspect of dementia and then it really becomes hard for the family to guess. , what’s going on. . so this done early repeatedly is a gift to your family, to the people who believe making this decision for you. But it also allows us the most control over our healthcare by doing it early and often.

Bri (22:38):

Absolutely. Well, one of the last questions I wanna ask you from you is what issues arise for a family or for loved ones when something like this is not in place.

Mary Beth (22:48):

You know, we all have of family issues.

Bri (22:51):

There’s interesting dynamics for families.

Mary Beth (22:53):

You know, and some of these issues arise and our personal experiences play into the decision we think, right. My grandmother would want. . And if there’s seven of us in the room guessing what my grandmother would, we’re probably get seven different answers.

Bri (23:12):

Absolutely.

Mary Beth (23:13):

And so sometimes we really try to think of it as if grandma was in this empty chair. What do you think she would say about X, Y, and Z? And then we can find some resolution, but usually the process is much harder, much longer. And, and oftentimes decisions are needed as quickly as possible to allow the patient the most comfort and quality of life.

Bri (23:39):

My mom’s one of 10. So I can imagine in a situation like that. Right. But you also add friends and family who also care about you and there’s, that’s a lot of opinions can start to enter the conversation. So at that point, does a doctor look and decide, you know, does a doctor decide or do they just decide there’s gonna be one point person?

Mary Beth (24:02):

Well, the doctor can’t really decide that there’s gonna be one point person, unless there’s a document there, but someone like myself, our provider or chaplain would try to talk with the family. And, and sometimes, you know, decisions are not made because this isn’t written down. And so care can be given for a long time, you know, in the medical community, we can keep people alive for a very long time doing many procedures. And if that’s what a person wants, that’s fine. . If it’s not what they want, we really wanna honor that if they haven’t told us, we’re guessing.

Bri (24:41):

And so what do we do with this doc? I wanna make sure we reiterate that.

Mary Beth (24:48):

Well, the, the next thing that we would do after we get your signature witness is we would make copies. We’d give you one copy to keep, we’d give you two extra copies to give to your mom and to your friend. Okay. And then I would suggest making copies for your medical provide. And then maybe putting it down on your calendar in a couple years to revisit this and to be sure and get one for your mom.

Bri (25:15):

Perfect. So you can call your doctor up your primary care physician and say, I just did an advanced directive. I know I don’t have an appointment. What number? Okay. What’s your fax number and send it over exactly easy. Is that okay?

Mary Beth (25:25):

Bring it to the hospital. Should you ever go to the hospital without being an emergency?

Bri (25:29):

Okay. Well, I’m so glad we got to go through this. Me too, because truly, I think it’s, you know I wanted to do it that way. We could talk through, you know, any questions that may arise for anyone listening to, to go through this. But again, it’s incredibly important and it is a gift that you can give to your friends and family. So thank you so much for walking through this with us.

Mary Beth (25:50):

Thank you, Brie. And I think in a way you may have found it easier than you expected.

Bri (25:56):

Yes, absolutely, lingering questions to ask myself. Yes. But I think it leaves room for, like you said, revisiting, right.

Mary Beth (26:03):

Thank you so much.

Mary Beth (26:05):

Glad we could do this.

Dallas Nephrology Associates’ (DNA) podcast series, Let’s Talk About Kidneys, is provided for general information purposes only and does not replace the need to talk with a healthcare professional about your unique situation, care and options. Our goal is to provide you with as much information as possible so you can be as informed as possible. Reference to any specific product, service, entity or organization does not constitute an endorsement or recommendation by DNA. The views expressed by guests are their own and their appearance on the program does not imply an endorsement of them or any entity or organization they represent. The views and opinions expressed by DNA employees, contractors or guests are their own and do not necessarily reflect the views of DNA or any of its representatives. Some of the resources identified in the podcast are links to other websites. These other websites may have differing privacy policies from those of DNA.  Please be aware that the Internet sites available through these links and the material that you may find there are not under the control of DNA. DNA shall have no responsibility for the accuracy, legality or content of the external site or subsequent links. Contact the external site for answers to questions regarding its content. The resources included or referenced in the podcasts and on the website are provided simply as a service.  DNA does not recommend, approve, or endorse any of the content at the linked site(s).  The content provided on this website and in the podcasts is not medical advice and should not be used to evaluate, diagnose, treat, or correct any medical condition. The content is solely intended to educate users regarding chronic kidney disease, end-stage renal disease (“ESRD”), end-stage kidney disease (“ESKD”) and related conditions, and ESRD/ESKD treatment options.  None of the information provided on this website or referenced in the podcasts is a substitute for contacting a healthcare professional.